Five Dimensions of Needs for Help: The Efficacy of a Technology-Based Intervention Among Asian American Breast Cancer Survivors.

Cancer survivors including Asian American breast cancer survivors have reported their high needs for help during their survivorship process. With the COVID-19 pandemic, the necessity of technology-based programs to address their needs for help without face-to-face interactions has been highlighted. The purpose of this randomized intervention study was to determine the efficacy of a technology-based program in reducing various types of needs for help among this specific population. This was a randomized clinical trial with repeated measures. A total of 199 participants were included in the data analysis. The recruitment settings included both online and offline communities/groups for Asian Americans. The needs for help were assessed using the Support Care Needs Survey-34 Short Form (SCNS) subscales measuring psychological, information, physical, support, and communication needs. Data analysis was conducted through an intent-to-treat approach. In the mixed effect models, psychological needs, information needs, physical needs, and communication needs decreased over time (P < .001). However, there were no significant group * time effects. Social support significantly mediated the effects of a technology-based intervention on psychological, information, and support needs at the pre-test and the post-1 month. This study supported significant decreases in the needs for help of Asian American breast cancer survivors by a technology-based intervention. Further studies are needed with other racial/ethnic groups of cancer survivors to confirm the efficacy of a technology-based intervention in reducing cancer survivors' needs for help during their survivorship process.

Pandemic Effects on Stability of End-of-Life Preferences and Patient-Surrogate Dyad Congruence.

CONTEXT: Whether a largescale disaster alters people's previous decisions about their end-of-life care is unknown. OBJECTIVES: We examined the effects of a disaster, the COVID-19 pandemic, on stability of end-of-life care preferences among dialysis patients and on patient-surrogate goals-of-care congruence. METHODS: We used a natural experimental design to examine goals-of-care preferences pre- and postexposure to the pandemic during a pragmatic trial testing SPIRIT (sharing patient's illness representations to increase trust), an evidence-based advance care planning (ACP) intervention. There were 151 patient-surrogate dyads who prior to the pandemic lockdown had completed baseline (T1) and postintervention assessments (T2) regarding their goals-of-care preferences in two end-of-life scenarios. Of those 151 dyads, 59 intervention, and 51 usual care dyads consented to be in the present study and completed the goals-of-care tool two additional times, at enrollment (T3) and six months later (T4), along with the COVID stress scale (CSS). Dyad congruence was ascertained by comparing patient and surrogate responses to the goals-of-care tool. RESULTS: There were no changes over time in the proportions of patients who chose comfort-care-only in the goals-of-care tool. The proportion of patients who chose comfort-care-only and dyad congruence were higher in SPIRIT compared to usual care, but there was no interaction between that treatment effect and exposure to the pandemic. CSS was associated with neither patients' preferences nor dyad congruence. CONCLUSIONS: The pandemic alone did not appear to influence patients' goals-of-care preferences or dyad congruence. This finding supports the stability of value-based end-of-life preferences in general, even during a disaster.

Impacts of compounding drought and heatwave events on child mental health: insights from a spatial clustering analysis.

BACKGROUND: Concurrent heatwave and drought events may have larger health impacts than each event separately; however, no US-based studies have examined differential mental health impacts of compound drought and heatwave events in pediatric populations. OBJECTIVE: To examine the spatial patterns of mood disorders and suicide-related emergency department (ED) visits in children during heatwave, drought, and compound heatwave and drought events. We tested whether the occurrence of compound heatwave and drought events have a synergistic (multiplicative) effect on the risk of mental health related outcomes in children as compared to the additive effect of each individual climate hazard. Lastly, we identified household and community-level determinants of geographic variability of high psychiatric burden. METHODS: Daily counts of psychiatric ED visits in North Carolina from 2016 to 2019 (May to Sept) for pediatric populations were aggregated at the county scale. Bernoulli cluster analyses identified high-risk spatial clusters of psychiatric morbidity during heatwave, drought, or compound heatwave and drought periods. Multivariate adaptive regression models examined the individual importance of household and community-level determinants in predicting high-risk clustering of mood disorders or suicidality across the three climate threats. RESULTS: Results showed significant spatial clustering of suicide and mood disorder risks in children during heatwave, drought, and compound event periods. Periods of drought were associated with the highest likelihood of spatial clustering for suicide and mood disorders, where the risk of an ED visit was 4.48 and 6.32 times higher, respectively, compared to non-drought periods. Compounding events were associated with a threefold increase in both suicide and mood disorder-related ED visits. Community and household vulnerability factors that most contributed to spatial clustering varied across climate hazards, but consistent determinants included residential segregation, green space availability, low English proficiency, overcrowding, no broadband access, no vehicle access, housing vacancy, and availability of housing units. CONCLUSION: Findings advance understanding on the locations of vulnerable pediatric populations who are disproportionately exposed to compounding climate stressors and identify community resilience factors to target in public health adaptation strategies.

Relationships Between Strong Black Woman Belief, Coping Behaviors, Perceived Social Support, and Psychological Distress Symptoms for Black Mothers After Stillbirth.

INTRODUCTION: Psychological distress symptoms (symptoms of depression, anxiety, and posttraumatic stress) are common following stillbirth. Black women who experience stillbirth are less likely to seek support than White women, consistent with the strong Black woman (SBW) construct, which expects Black women to tolerate stress and trauma gracefully, without seeking help. METHODS: In this cross-sectional study we sought to determine the relative contributions of SBW belief, perceived lack of social support, and culturally relevant coping behaviors to psychological distress symptoms in Black women bereaved by stillbirth. We partnered with a stillbirth support organization to recruit a sample of 91 Black women bereaved by stillbirth in the 3 years prior to study participation. The online study survey measured SBW belief, culturally relevant coping behaviors, perceived social support, and psychological distress symptoms along with sociodemographics, pregnancy history, and stillbirth characteristics. We used stepwise selection in multiple linear regression to determine the relative contributions of SBW belief, perceived social support, and coping behaviors to measures of psychological distress symptoms in our sample. RESULTS: Higher SBW belief, lower perceived social support, and higher collective coping (coping behaviors involving other people) were associated with increases in all 3 measures of psychological distress symptoms, controlling for age and other traumatic events. DISCUSSION: Further understanding of the influence of SBW belief on Black women's psychological distress following stillbirth may assist with the development of culturally appropriate interventions to mitigate psychological distress symptoms in this group.

A randomized controlled trial testing a virtual program for Asian American women breast cancer survivors.

A culturally tailored virtual program could meet the survivorship needs of Asian American women breast cancer survivors (AABC). This study aims to determine the efficacy of a culturally tailored virtual information and coaching/support program (TICAA) in improving AABC's survivorship experience. A randomized clinical trial (NCT02803593) was conducted from January 2017 to June 2020 among 199 AABC. The intervention group utilized TICAA and the American Cancer Society [ACS] website while the control group used only ACS website for 12 weeks. The outcomes were measured using the SCNS-34SF (needs; primary), the MSAS-SF (symptoms; secondary), and the FACT-B (quality of life; secondary). The data were analyzed using an intent-to-treat approach. The intervention group showed significant reductions in their needs from the baseline (T0) to post 4 weeks (T1) and to post 12 weeks (T2). Although the changes were not statistically significant, the intervention group had decreased symptoms from T0 to T2 while the control group had an increase in their symptoms. The intervention group had a significant increase in their quality of life from T0 to T2. A culturally tailored virtual program could therefore improve quality of life in AABC patients. Trial Registration: To Enhance Breast Cancer Survivorship of Asian Americans (TICAA), NCT02803593, https://clinicaltrials.gov/ct2/show/NCT02803593?titles=TICAA&draw=2&rank=1.

Circulating short chain fatty acids and fatigue in patients with head and neck cancer: A longitudinal prospective study.

Fatigue among patients with head and neck cancer (HNC) has been associated with higher inflammation. Short-chain fatty acids (SCFAs) have been shown to have anti-inflammatory and immunoregulatory effects. Therefore, this study aimed to examine the association between SCFAs and fatigue among patients with HNC undergoing treatment with radiotherapy with or without concurrent chemotherapy. Plasma SCFAs and the Multidimensional Fatigue Inventory-20 were collected prior to and one month after the completion of treatment in 59 HNC patients. The genome-wide gene expression profile was obtained from blood leukocytes prior to treatment. Lower butyrate concentrations were significantly associated with higher fatigue (p = 0.013) independent of time of assessment, controlling for covariates. A similar relationship was observed for iso/valerate (p = 0.025). Comparison of gene expression in individuals with the top and bottom 33% of butyrate or iso/valerate concentrations prior to radiotherapy revealed 1,088 and 881 significantly differentially expressed genes, respectively (raw p < 0.05). The top 10 Gene Ontology terms from the enrichment analyses revealed the involvement of pathways related to cytokines and lipid and fatty acid biosynthesis. These findings suggest that SCFAs may regulate inflammatory and immunometabolic responses and, thereby, reduce inflammatory-related symptoms, such as fatigue.

Associations of inflammation with neuropsychological symptom cluster in patients with Head and neck cancer: A longitudinal study.

Purpose: Head and neck cancer (HNC) patients may experience multiple co-occurring neuropsychological symptoms (NPS) cluster, including fatigue, depression, pain, sleep disturbance, and cognitive impairment. While inflammation has been attributed as a key mechanism for some of these symptoms, its association with the NPS as a cluster of symptoms is unknown. Thus, the aim of this study was to examine the association between peripheral inflammation and NPS cluster among HNC patients over cancer treatment (radiotherapy with or without chemotherapy). Methods: HNC patients were recruited and followed at pre-treatment, end of treatment, three months and one-year post-treatment. Plasma inflammatory markers, including C-reactive protein (CRP), tumor necrosis factor-alpha (TNFA), soluble tumor necrosis factor receptor-2 (sTNFR2), interleukin-1 beta (IL1-ß), interleukin-6 (IL-6), interleukin-10 (IL-10), monocyte chemotactic protein-1 (MCP-1), and interleukin-1 receptor antagonist (IL-1RA) and patient-reported NPS cluster were collected at the 4 time points. Associations between inflammatory markers and the NPS cluster were analyzed using linear mixed-effects models and generalized estimating equations (GEE) models controlling covariates. Results: 147 HNC patients were eligible for analysis. 56% of the patients received chemoradiotherapy as treatment. The highest NPS cluster score was reported at the end of treatment, which gradually decreased over time. An increase in inflammatory markers including CRP, sTNFR2, IL-6 and IL-1RA was associated with higher continuous NPS cluster scores (p<0.001, p = 0.003, p<0.001, p<0.001; respectively). GEE further confirmed that patients with at least two moderate symptoms had elevated sTNFR2, IL-6, and IL-1RA (p = 0.017, p = 0.038, p = 0.008; respectively). Notably, this positive association between NPS cluster and inflammatory markers was still significant at one-year post-treatment for CRP (p = 0.001), sTNFR2 (p = 0.006), and IL-1RA (p = 0.043). Conclusions: Most HNC patients experienced NPS clusters over time, especially immediately after the end of treatment. Elevated inflammation, as represented by inflammatory markers, was strongly associated with worse NPS cluster over time; this trend was also notable at one-year post-treatment. Our findings suggest that peripheral inflammation plays a pivotal role in the NPS cluster over cancer treatment, including long-term follow-ups. Interventions on reducing peripheral inflammation may contribute to alleviating the NPS cluster in cancer patients.

Informal Caregiving Networks of Older Adults With Dementia Superimposed on Multimorbidity: A Social Network Analysis Study.

Background and Objectives: Caregiving is a social process and commonly involves more than a single caregiver, especially for older adults with multimorbidity, including dementia. This study was to characterize informal caregiving networks of older adults with dementia superimposed on multimorbidity (e.g., end-stage kidney disease) and to examine the relationships of network properties to outcomes of caregivers and older adults. Research Design and Methods: An egocentric social network survey was conducted. Up to 3 family caregivers of older adults on dialysis who had moderate-to-severe irreversible cognitive impairment with or without a documented diagnosis of dementia were recruited from 11 dialysis centers in 2 states. Caregivers completed a social network survey about individuals providing caregiving to the older adult and measures of caregiving burden and rewards, depression, and financial hardship. Older adults' emergency department visits and hospital admissions during the past 12 months were abstracted from the medical records. Results: A total of 76 caregiver informants of 46 older adults (78% Black) participated in the study. Of the 46 older adults, 65% had a multimember network (median size of 4). As the network density (the proportion of ties between members among all possible ties) increased, primary caregivers' financial hardship decreased whereas nonprimary caregivers' financial hardship increased. Further, for every 1-unit increase in mean degree (the average number of connections among members), there was a nearly fourfold increase in the odds of no hospital admission during the prior year for the older adult. Discussion and Implications: The network dynamics of informal caregiving networks may have an impact on the well-being of caregivers and older adults with dementia, but confirmatory longitudinal studies are needed.

The ASCENT Intervention to Improve Access and Reduce Racial Inequalities in Kidney Waitlisting: A Randomized, Effectiveness-Implementation Trial.

BACKGROUND: The US kidney allocation system (KAS) changed in 2014, but dialysis facility staff (including nephrologists, social workers, nurse managers, and facility administrators) had low awareness of how this policy change could affect their patients' access to transplant. We assessed the effectiveness of a multicomponent and multilevel educational and outreach intervention targeting US dialysis facilities with low waitlisting, with a goal of increasing waitlisting and reducing Black versus White racial disparities in waitlisting. METHODS: The Allocation System Changes for Equity in Kidney Transplantation (ASCENT) study was a cluster-randomized, pragmatic, multilevel, effectiveness-implementation trial including 655 US dialysis facilities with low waitlisting, randomized to receive either the ASCENT intervention (a performance feedback report, a webinar, and staff and patient educational videos) or an educational brochure. Absolute and relative differences in coprimary outcomes (1-year waitlisting and racial differences in waitlisting) were reported among incident and prevalent patients. RESULTS: Among 56,332 prevalent patients, 1-year waitlisting decreased for patients in control facilities (2.72%-2.56%) and remained the same for patients in intervention facilities (2.68%-2.75%). However, the proportion of prevalent Black patients waitlisted in the ASCENT interventions increased from baseline to 1 year (2.52%-2.78%), whereas it remained the same for White patients in the ASCENT intervention facilities (2.66%-2.69%). Among incident patients in ASCENT facilities, 1-year waitlisting increased among Black patients (from 0.87% to 1.07%) but declined among White patients (from 1.54% to 1.27%). Significant racial disparities in waitlisting were observed at baseline, with incident Black patients in ASCENT facilities less likely to waitlist compared with White patients (adjusted odds ratio [aOR], 0.56; 95% confidence interval [CI], 0.35 to 0.92), but 1 year after the intervention, this racial disparity was attenuated (aOR, 0.84; 95% CI, 0.49 to 1.42). CONCLUSIONS: The ASCENT intervention may have a small effect on extending the reach of the new KAS policy by attenuating racial disparities in waitlisting among a population of US dialysis facilities with low waitlisting. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: National Institutes of Health ( NCT02879812 ). PODCAST: This article contains a podcast at https://dts.podtrac.com/redirect.mp3/www.asn-online.org/media/podcast/CJASN/2023_03_08_CJN09760822.mp3.

Mobile Phone Apps for HIV Prevention Among College-Aged Black Women in Atlanta: Mixed Methods Study and User-Centered Prototype.

BACKGROUND: Black women in college are disproportionately affected by HIV diagnoses. Mobile apps can facilitate the innovative delivery of accurate HIV and sexual and reproductive health information. However, mobile health interventions are severely underused in this population. OBJECTIVE: We aimed to quantitatively and qualitatively explore the perspectives of college-aged Black women on using a mobile health app for HIV prevention and sexual and reproductive health. The data obtained from Black women were used to design preliminary mobile app wireframes and features. METHODS: This explanatory, sequential mixed methods study took place from 2019 to 2020 and targeted Black women who were enrolled in college or who had recently graduated from college. Convenience sampling was used during the quantitative phase, followed by purposive sampling in the qualitative phase. A cross-sectional web-based survey evaluating the willingness to use a mobile app for HIV prevention was conducted in the quantitative phase. Descriptive statistics were used for all variables. A separate focus group discussion was conducted with Black women in college to expand on the quantitative results. Focus group discussions explored their perceptions on HIV and health content delivered through a mobile app along with potential features that participants desired within the app. Using the data obtained, we selected the primary features for the app prototype. RESULTS: In total, we enrolled 34 participants in the survey, with 6 participating in focus group discussions. Over half of the respondents reported a willingness to use an app that contained pre-exposure prophylaxis content. Women who claimed recent sexual activity reported being more likely to use an app feature that would allow them to order an at-home HIV testing kit than their non-sexually active counterparts. The emerging themes from the focus group session were Black women's health concerns, HIV risk, sources of health information, and preferred app features. The content in our prototype included speaking with a specialist, HIV and pre-exposure prophylaxis information, holistic wellness, and features promoting engagement and retention. CONCLUSIONS: The results of our study guided the design of wireframes for an app prototype targeting HIV prevention in college-aged Black women. The rapid growth of mobile devices in Black communities, coupled with high rates of smartphone ownership among Black youth, makes mobile health interventions a promising strategy for addressing sexual and reproductive health disparities. Participants in our sample were willing to use a culturally appropriate and gender-considerate app for their sexual health needs. Our findings indicate that Black women in college may be excellent candidates for mobile app-based interventions.

Sleep duration and biomarkers of inflammation in African American and white participants with a parental history of Alzheimer's disease.

Introduction: African Americans (AA)s have worse inflammation, worse sleep, and a greater incidence of Alzheimer's disease (AD) compared to whites; however, no studies have examined associations between biomarkers, sleep, and cognition, and differences by race. Methods: Seventy-six cognitively normal, middle aged (45-65 years) adults with a parental history of AD were included in this study. Associations between biomarkers (tumor necrosis factor-α [TNF-α], interleukin-10 [IL-10], intercellular adhesion molecule-1 [ICAM-1],, and C-reactive protein [CRP]) and self-reported sleep or cognition measures, were assessed. Results: Average sleep duration was significantly lower for AA versus whites (average[SD]) in hours: 6.02(1.18) versus 7.23(0.91), P = .000004). We found a statistically significant association between plasma IL-10 and sleep duration (Spearman's ρ = 0.26, P = .04) and CSF ICAM-1 and sleep quality (Spearman's ρ = 0.30, P = .03). Discussion: Longer sleep duration is positively associated with plasma IL-10 levels irrespective of race. Sleep quality was positively associated with CSF ICAM-1 only in African Americans.

A network analysis of self-reported psychoneurological symptoms in patients with head and neck cancer undergoing intensity-modulated radiotherapy.

BACKGROUND: Patients with head and neck cancer experience psychoneurological symptoms (PNS) (i.e., depression, fatigue, sleep disturbance, pain, and cognitive dysfunction) during intensity-modulated radiotherapy (IMRT) that decrease their functional status, quality of life, and survival rates. The purpose of this study was to examine and visualize the relationships among PNS within networks over time and evaluate for demographic and clinical characteristics associated with symptom networks. METHODS: A total of 172 patients (mean age, 59.8 ± 9.9 years; 73.8%, male; 79.4%, White) completed symptom questionnaires four times, namely, before IMRT (T1), 1 month (T2), 3 months (T3), and 12 months (T4) post IMRT. Network analysis was used to examine the symptom-symptom relationships among PNS. Centrality indices, including strength, closeness, and betweenness, were used to describe the degrees of symptom network interconnections. Network comparison test was used to assess the differences between two symptom networks. RESULTS: Depression was associated with the other four symptoms, and fatigue was associated with the other three symptoms across the four assessments. Based on the centrality indices, depression (rstrength  = 1.3-1.4, rcloseness  = 0.06-0.08, rbetweeness  = 4-10) was the core symptom in all symptom networks, followed by fatigue. Female gender, higher levels of stress, and no alcohol use were associated with stronger symptom networks in network global strength before IMRT. CONCLUSION: Network analysis provides a novel approach to gain insights into the relationships among self-reported PNS and identify the core symptoms and associated characteristics. Clinicians may use this information to develop symptom management interventions that target core symptoms and interconnections within a network. LAY SUMMARY: This study describes the symptom-symptom relationships for five common symptoms in patients with head and neck cancer receiving radiotherapy. Depression and fatigue appeared to be two core symptoms that were connected with sleep disturbance, pain, and cognitive dysfunction within a network. Several characteristics (i.e., female, higher stress, no alcohol use) were associated with stronger symptom networks.

Perceptions of Anal Cancer Risk Among HIV-Positive and High-Risk HIV-Negative Women.

OBJECTIVES: Women living with HIV (WLWH) have a greater risk of anal cancer than women without HIV; however, there are limited studies that examine awareness of anal cancer risk among WLWH and "high-risk" HIV-negative women. This study examines risk factors for anal cancer, perceptions of risk for anal cancer, and perceptions of anal cancer screening among a cohort of WLWH and high-risk HIV-negative women. MATERIALS AND METHODS: From the Atlanta, GA, and Bronx, NY, sites of the Women's Interagency HIV Study, 155 WLWH and HIV-negative women were enrolled and the Champion Health Belief Model Scale questionnaire measuring risk perceptions to anal cancer was administered to each participant. RESULTS: The WLWH perceived anal cancer to be less serious and perceived facing fewer barriers to anal cancer screening than HIV-negative women (both p = .01). Older women (≥50 years) felt that they had less barriers to anal cancer screening (p = .047). Moreover, women who had less than a high school education felt more susceptible to anal cancer (p = .001), as did women who reported a history of anal intercourse (p = .017). CONCLUSIONS: Despite being at an increased risk for anal cancer, perceptions of susceptibility to anal cancer and seriousness of anal cancer were low among WLWH. These findings highlight opportunities for provider and patient educational interventions to improve awareness of anal cancer risk among WLWH.

Barriers to Pain Management: Incongruence in Black Cancer Caregiving Dyads.

CONTEXT: To effectively manage cancer pain, there is a need to understand how caregiving dyads appraise symptoms. Dyadic appraisal of symptoms influences whether the dyad perceives the patient's pain is managed well and whether they are on the same page with their appraisal. Beliefs can act as barriers to the dyadic appraisal. OBJECTIVES: This secondary data analysis examined incongruence within Black cancer caregiving dyads regarding beliefs about pain management and potential medication side effects using the Barriers Questionnaire-13. Associated factors were also examined. METHODS: Guided by the Theory of Dyadic Illness Management, dyadic multilevel modeling was conducted with data from 60 Black cancer caregiving dyads to determine the dyadic appraisal of beliefs about pain management and potential medication side effects, which includes the average perception of barriers within the dyad (i.e., dyadic average) and the dyadic incongruence (i.e., gap between patient and caregiver). RESULTS: On average, Black cancer caregiving dyads reported moderate barriers regarding pain management (2.262 (SE=0.102, P<0.001) and medication side effects (2.223 (SE=0.144, P<0.001). There was significant variability across dyads regarding barriers to pain management and medication side effects. Lower patient education and higher patient-reported pain interference were significantly associated with more perceived barriers to pain management and potential medication side effects. Incongruence within dyads regarding barriers to pain management and medication side effects were significantly associated with the caregiver's report of patient's pain interference. CONCLUSION: Findings suggest the importance of appraisal that includes both members of Black cancer caregiving dyads regarding pain management.

Exercise and Cognitive Training Intervention Improves Self-Care, Quality of Life and Functional Capacity in Persons With Heart Failure.

This study evaluated a 12-week, home-based combined aerobic exercise (walking) and computerized cognitive training (EX/CCT) program on heart failure (HF) self-care behaviors (Self-care of HF Index [SCHFI]), disease specific quality of life (Kansas City Cardiomyopathy Questionnaire [KCCQ]), and functional capacity (6-minute walk distance) compared to exercise only (EX) or a usual care attention control (AC) stretching and flexibility program. Participants (N = 69) were older, predominately female (54%) and African American (55%). There was significant improvement in self-care management, F(2, 13) = 5.7, p < .016; KCCQ physical limitation subscale, F(2, 52) = 3.4, p < .039; and functional capacity (336 ± 18 vs 388 ± 20 m, p < .05) among the EX/CCT participants. The underlying mechanisms that EX and CCT targets and the optimal dose that leads to improved outcomes are needed to design effective interventions for this rapidly growing population.

Promoting Caregiver Mastery in Black American Dementia Caregivers.

Over 6 million older Americans live with Alzheimer's disease and related dementias; Black American older adults' prevalence is more than twice that of non-Hispanic White older adults. The Black American dementia caregiving experience can be encapsulated within the Black Family Socioecological Context Model, which provides a conceptual basis for examining social determinants of health at individual, family, community, and societal levels with careful consideration for how the intersection of race, gender, and class of Black American dementia caregivers influences the multiple dimensions of their caregiving experiences. Family dynamics, community setting, and health care systems have a potentially bidirectional influence on these caregivers, which is shaped by historical and ongoing systemic and institutional racism and general disenfranchisement. This Forum article outlines how the Social Cognitive Theory offers ways for Black American dementia caregivers to achieve a sense of mastery within the complicated and fraught ecology within which their caregiving occurs. We propose a research agenda to create programs and interventions for enhancing a sense of mastery among Black American dementia caregivers. Two concepts in particular, "constraints" and "efficacy expectations," provide ways to create a systematic approach to developing successful coping strategies for the constraints perceived by individuals as they undertake and function in the caregiving role. The recognition of the complexity of the caregiving ecosystem and intersectionality of caregivers' experience and identity emphasize the importance of individualization: Each caregiver's experience of this ecosystem-and therefore each Black American dementia caregiver's way to mastery within it-will be uniquely shaped and experienced.

Congruence of pain perceptions between Black cancer patients and their family caregivers.

PURPOSE: This cross-sectional study evaluated congruence in pain assessment among Black cancer patients taking opioids for pain and their family caregivers and the effects of patient-reported depressive symptoms and cognitive complaints on the congruence. METHODS: Patient-reported pain scores (current, average, and worst pain severity and pain interference) and caregiver proxy scores were independently assessed (Brief Pain Inventory). Patient-reported depressive symptoms (Patient Health Questionnaire-8) and cognitive complaints (Cognitive Difficulties Scale) were also assessed. Paired t-test, intraclass correlation coefficient (ICC), and Bland-Altman (BA) plots were used to evaluate group and dyad level congruence in pain assessment. The influence of patient depressive symptoms and cognitive complaints on congruence was examined using bivariate analyses and BA plots. RESULTS: Among 50 dyads, 62% of patients and 56% of caregivers were female. Patients were older than caregivers (57 vs. 50 years, p = .008). Neither statistically significant (t-test) nor clinically relevant mean differences in pain severity and interference were found at a group level. At the dyad level, congruence was poor in pain now (ICC = 0.343) and average pain severity (ICC = 0.435), but moderate in worst pain severity (ICC = 0.694) and pain interference (ICC = 0.603). Results indicated better congruence in pain severity between patients with depressive symptoms and their caregivers, compared to patients without depressive symptoms. Patient CDS scores had no significant correlations with score differences between patients and caregivers in any pain variables. CONCLUSION: Congruence varied depending on how the analysis was done. More information is needed to understand pain assessment between patients and caregivers.

Social and Environmental Influences on Sexual Behaviors of College Black Women: Within Group Diversity Between HBCU vs. PWI Experiences.

Black women carry a disproportionate number of new HIV infections in the USA. Studies that have assessed HIV risk perception along with HIV prevention interventions for Black women have primarily focused on Black women of low socioeconomic status. Few studies have assessed HIV risk perceptions and sexual behavior among college-educated Black women of higher socioeconomic status despite their high risk of HIV. College-educated Black women are most likely to acquire HIV while in college, and there has been a marked absence of research assessing the environmental and cultural influences present throughout college-campuses, coupled with evaluating how these factors shape sexual behaviors. We conducted surveys with Black female students attending a historically Black college and Black female students attending a predominately White university, and compared baseline differences in sexual behaviors among both populations. Results showed that for participants attending the historically Black college certain sociocultural elements, such as music and media, had a significantly stronger influence on sexuality and sexual behaviors compared with students attending predominately White universities. The development of future HIV prevention interventions for Black women necessitates an understanding of the diverse microcultures that Black women come from. This research is high priority for college-educated Black women given this population's lack of inclusion in HIV prevention research.

Kidney transplant program waitlisting rate as a metric to assess transplant access.

Kidney transplant program performance in the United States is commonly measured by posttransplant outcomes. Inclusion of pretransplant measures could provide a more comprehensive assessment of transplant program performance and necessary information for patient decision-making. In this study, we propose a new metric, the waitlisting rate, defined as the ratio of patients who are waitlisted in a center relative to the person-years referred for evaluation to a program. Furthermore, we standardize the waitlisting rate relative to the state average in Georgia, North Carolina, and South Carolina. The new metric was used as a proof-of-concept to assess transplant-program access compared to the existing transplant rate metric. The study cohorts were defined by linking 2017 United States Renal Data System (USRDS) data with transplant-program referral data from the Southeastern United States between January 1, 2012 and December 31, 2016. Waitlisting rate varied across the 9 Southeastern transplant programs, ranging from 10 to 22 events per 100 patient-years, whereas the program-specific waitlisting rate ratio ranged between 0.76 and 1.33. Program-specific waitlisting rate ratio was uncorrelated with the transplant rate ratio (r = -.15, 95% CI, -0.83 to 0.57). Findings warrant collection of national data on early transplant steps, such as referral, for a more comprehensive assessment of transplant program performance and pretransplant access.

Adherence trajectories in oral therapy for chronic myeloid leukemia: Overview of a research protocol.

Over a quarter of chemotherapy regimens now include oral agents. Individuals living with cancer are now responsible for administering this lifesaving therapy at home by taking every dose as prescribed. One type of oral chemotherapy, tyrosine kinase inhibitors (TKIs), is the current recommended treatment for chronic myeloid leukemia. This targeted therapy has markedly improved survival but comes with significant side effects and financial costs. In the study described in this protocol, the investigators seek to understand the dynamic nature of TKI adherence experienced by individuals diagnosed with CML. Using a mixed-method approach in this prospective observational study, funded by the National Cancer Institute, we seek to describe subjects' adherence trajectories over 1 year. We aim to characterize adherence trajectories in individuals taking TKIs using model-based cluster analysis. Next, we will determine how side effects and financial toxicity influence adherence trajectories. Then we will examine the influence of TKI adherence trajectories on disease outcomes. Additionally, we will explore the experience of patients taking TKIs by interviewing a subset of participants in different adherence trajectories. The projected sample includes 120 individuals taking TKIs who we will assess monthly for 12 months, measuring adherence with an objective measure (Medication Event Monitoring System). Identifying differential trajectories of adherence for TKIs is important for detecting subgroups at the highest risk of nonadherence and will support designing targeted interventions. Results from this study can potentially translate to other oral agents to improve care across different types of cancer.