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The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 ( APOL1) genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members ( n = 76) about the potential risks and benefits of returning APOL1 research results. Stakeholders strongly supported returning APOL1 results. Benefits include reciprocity for participants, community education and rebuilding trust in research, and expectation of future actionability. Risks include analytic validity, misunderstanding, psychological burdens, stigma and discrimination, and questionable resource tradeoffs. Conclusions: APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.

Chronic disease self-management is the establishment and maintenance of behaviors needed to be an active participant in one’s health care and experience the best health outcomes. Kidney disease self-management behaviors to slow disease progression include engaging in exercise or physical activity; adhering to a diet low in sodium, potassium, and phosphorus; monitoring laboratory parameters; managing complex medication regimens; coping with disease-related emotional distress; and communicating effectively with providers. Durable behavior change has been difficult to achieve in kidney disease, in part because of an incomplete understanding of the multilevel factors determining chronic disease self-management in this patient group. The biopsychosocial model of chronic illness care posits that an individual’s health outcomes result from biological, psychological, social, and environmental factors as part of a multilevel systems hierarchy. Although this theoretical model has been used to comprehensively identify factors driving self-management in other chronic conditions, it has been applied infrequently to behavioral interventions in kidney disease. In this scoping review, we apply the biopsychosocial model of health to identify individual, interpersonal, and systems-level drivers of kidney disease self-management behaviors. We further highlight factors that may serve as novel, impactful targets of theory-based behavioral interventions to understand and sustain behavior change in kidney disease.

Introduction Black men are over-represented in the end stage kidney disease population and are at disproportionate risk of unfavorable outcomes. There is a paucity of investigation to elucidate the mediators of this risk. This study attempts to identify residential community attributes as a possible contributor. Methods A post-hoc analysis of prospectively collected data from a cohort of Black men enrolled in the US Dialysis Outcomes and Practice Patterns Study (DOPPS), 2010-–2015, linked to the American Community Survey, by dialysis facility zip codes was undertaken. The exposure variable was the dialysis facility community composition as defined by percent Black residents. Negative binomial regression was used to estimate incidence rate ratio (IRR) of hospitalization (first outcome) for Black men in crude and adjusted models. Similarly, Cox proportional hazards modeling was used to estimate mortality (second outcome) for Black men by type of community. Results A total of 702 Black men receiving chronic hemodialysis were included in the study. Black men receiving hemodialysis in communities with greater proportions of Black residents had lower Charlson scores and fewer comorbidities, but a higher rate of hypertension. They had equivalent adherence to dialysis treatments, but a lower rate of arteriovenous fistula use and fewer dialysis minutes prescribed. Black men receiving dialysis in communities with a greater proportion of Black residents (per 10% increase) had higher adjusted hospitalization rates (IRR 1.09, 95% confidence interval [CI] 1.00–1.19) and mortality (hazard ratio [HR] 1.29, 95% CI 1.05–1.59). Conclusions This study supports the unique role of residential community as a risk factor for Black men with end stage kidney disease, showing higher hospitalization and mortality in those treating in Black versus non-Black communities, despite equivalent adherence and fewer comorbidities., Graphical abstract

Rationale & Objective Community racial composition has been shown to be associated with mortality in patients receiving maintenenance dialysis. It is unclear whether living in communities with predominantly Black residents is also associated with risk for hospitalization among patients receiving hemodialysis. Study Design Retrospective analysis of prospectively collected data from a cohort of patients receiving hemodialysis. Setting & Participants 4,567 patients treated in 154 dialysis facilities located in 127 unique zip codes and enrolled in US Dialysis Outcomes and Practice Patterns Study (DOPPS) phases 4 to 5 (2010-2015). Exposure Tertile of percentage of Black residents within zip code of patients’ dialysis facility, defined through a link to the American Community Survey. Outcome Rate of hospitalizations during the study period. Analytic Approach Associations of patient-, facility-, and community-level variables with community’s percentage of Black residents were assessed using analysis of variance, Kruskal-Wallis, or χ2/Fisher exact tests. Negative binomial regression was used to estimate the incidence rate ratio for hospitalizations between these communities, with and without adjustment for potential confounding variables. Results Mean age of study patients was 62.7 years. 53% were White, 27% were Black, and 45% were women. Median and threshold percentages of Black residents in zip codes in which dialysis facilities were located were 34.2% and ≥14.4% for tertile 3 and 1.0% and ≤1.8% for tertile 1, respectively. Compared with those in tertile 1 facilities, patients in tertile 3 facilities were more likely to be younger, be Black, live in urban communities with lower socioeconomic status, have a catheter as vascular access, and have fewer comorbid conditions. Patients dialyzing in communities with the highest tertile of Black residents experienced a higher adjusted rate of hospitalization (adjusted incidence rate ratio, 1.32; 95% CI, 1.12-1.56) compared with those treated in communities within the lowest tertile. Limitations Potential residual confounding. Conclusions The risk for hospitalization for patients receiving maintenance dialysis is higher among those treated in communities with a higher percentage of Black residents after adjustment for dialysis care, patient demographics, and comorbid conditions. Understanding the cause of this association should be a priority of future investigation.

Home dialysis use as a treatment for end-stage kidney disease varies locally, nationally, and internationally. There is a call to action in the United States to significantly increase access and uptake of home dialysis as the preferred dialysis treatment option. Although most do not object to patient choice in modality selection, the reality is that there are multilevel barriers both obvious and subtle that interfere with expanding home dialysis access. Financial barriers and how payment is structured continue to be key drivers, although new models of care are emerging that include for the first time incentives rather than penalties regarding home dialysis. Resources to support implementation include expert personnel requiring educational training. Policies requiring training curriculum content that is not only specified within nephrology but also for these multidisciplinary providers requisite for successful home dialysis to ensure professional expertise is ready and available, and also to cultivate champions of home modality within the broader nephrology community. Perhaps most importantly, innovation through expanded investment in research is necessary to advance practices, elevate quality, and improve outcomes. Policy in a variety of sectors at local, regional, national, and international levels has the potential to drastically drive expansion and increasing success of home dialysis.

Background In the US, Blacks with end-stage kidney disease (ESKD) have a four-fold higher prevalence rate of hemodialysis treatment and higher subsequent rates of hemodialysis treatment nonadherence and hospitalization compared to their White peers. Nonadherence to prescribed dialysis therapy is an underestimated life-threatening behavior, because of its association with increased morbidity and mortality. Few studies have specified and systematically evaluated targeted methods of increasing hemodialysis treatment adherence among Black hemodialysis patients with added focus on therapeutic alliance, a rewarding patient-centered relationship between patients and providers, based on common goals and objectives. This review seeks to evaluate the state of the science to determine the salience of a therapeutic alliance for the development of effective interventions positively impacting hemodialysis treatment adherence among Black patients. Methods Medline (via PubMed), Embase (OvidSP), Cumulative Index of Nursing and Allied Health Literature (CINAHL; EBSCOhost), and PsycInfo (ProQuest) databases were used to search for abstracts with the keywords “dialysis”, “therapeutic alliance”, and “treatment adherence and compliance”, including all underlying index terms and alternative variations of terms, in order to cover the entire scope of the field. Only randomized clinical trials and pre/postintervention studies published in the previous 10 years (2009–2019) and including a proportion of Black patients >25% were included for review. Results Only three intervention studies met these criteria, for a total aggregated sample of 130 — mean age 58.1 years and 53% female. None of these studies was composed exclusively of Black patients (range 62%–91.3%), nor did they present data specifically for Blacks. Despite the lack of robust data informing strategies to improve hemodialysis adherence among Blacks with ESRD, a limited number of intervention studies have reported positive effects on hemodialysis attendance. Discussion/Conclusion Further research is warranted to fill this significant gap in our understanding of theoretically based, therapeutic alliance–enhanced, and culturally tailored hemodialysis treatment–adherence interventions among Blacks.

Optimal care occurs when patients possess the skills, knowledge, and confidence needed to effectively manage their health. Promoting such patient activation in kidney disease care is increasingly being prioritized, and patient activation has recently emerged as central to kidney disease legislative policy in the United States. Two options of the Centers for Medicare and Medicaid Services Kidney Care Choices model-the Kidney Care First option and the Comprehensive Kidney Care Contracting option-now include patient activation as a quality metric; both models specifically name the patient activation measure (PAM) as the patient-reported outcome to use when assessing activation in kidney disease. Because nephrology practices participating in these models will receive capitated payments according to changes in patients' PAM scores, it is time to more critically evaluate this measure as it applies to patients with kidney disease. In this review, we raise important issues related to the PAM's applicability to kidney health, review and summarize existing literature that applies this measure to patients with kidney disease, and outline key elements to consider when implementing the PAM into practice and policy. Our aim is to spur further dialogue regarding how to assess and address patient activation in kidney disease to facilitate best practices for supporting patients in the successful management of their kidney health.

Whether individual results of genetic research studies ought to be disclosed to study participants has been debated in recent decades. Previously, the prevailing expert view discouraged the return of individual research results to participants because of the potential lack of analytic validity, questionable clinical validity and medical actionability, and questions about whether it is the role of research to provide participants with their data. With additional knowledge of participant perspectives and shifting views about the benefits of research and respect for participants, current expert consensus is moving toward support of returning such results. Significant ethical controversies remain, and there are many practical questions left to address, including appropriate procedures for returning results and the potential burden to clinicians when patients seek guidance about the clinical implications of research results. In this review, we describe current views regarding the return of genetic research results, including controversies and practical challenges, and consider the application of these issues to research on apolipoprotein L1 (APOL1), a gene recently associated with health disparities in kidney disease. Although this case is unique, it illustrates the complexities involved in returning results and highlights remaining questions.

Introduction: Individuals with chronic kidney disease (CKD) generally have poor participation in self-care. We hypothesized that greater kidney disease knowledge and health literacy would associate with better self-care. Methods: We enrolled 401 participants with non–dialysis-dependent CKD from one academic center in this cross-sectional study. Validated surveys were used to assess health literacy level (inadequate vs. adequate; Rapid Estimate of Adult Literacy in Medicine), perceived kidney disease knowledge (Perceived Kidney Disease Knowledge Survey [PiKS]), objective kidney disease knowledge (Kidney Disease Knowledge Survey [KiKS]), and a CKD self-care measure was constructed as the sum of self-reported self-care behaviors using the adapted Summary of Diabetes Self-Care Activities Assessment. The association between health literacy level, PiKS scores, KiKS scores, and the CKD self-care measure was assessed with multivariable adjusted linear regression models. Results: Participants had a mean age of 57 years and 17.7% had inadequate health literacy. PiKS scores were positively associated with the CKD self-care measure (β = 1.05, 95% confidence interval [CI] 0.50–1.63), and a positive trend was observed for KiKS scores and the CKD self-care measure (β = 0.30, 95% CI: −0.12 to 0.72). Health literacy was not associated with CKD self-care measure. Conclusion: Objective kidney disease knowledge is likely necessary, but not sufficient for self-care and may depend on the level of health literacy. Perceived kidney knowledge may offer a novel target to assess patients at risk for poor self-care, and be used in targeted educational interventions. Keywords: health literacy, kidney disease knowledge, perceived kidney disease knowledge, self-care, self-efficacy, self-management

BACKGROUND. Religiosity, encompassing spirituality and religious practices, is associated with reduced disease incidence among individuals of low socioeconomic status and who self-identify as Black. We hypothesized that religiosity associates with reduced end-stage kidney disease (ESKD) risk among Black but not White adults of low socioeconomic status. DESIGN. Cox models of religiosity and ESKD risk in 76,443 adults. RESULTS. Black adults reporting high spirituality had reduced ESKD risk after adjusting for demographic characteristics [Hazard Ratio (HR) .82 (95% Confidence Interval (CI)) (.69–.98)], depressive symptoms, social support, and tobacco use [HR .81 (CI .68–.96)]. When clinical covariates were added, associations between spirituality and ESKD were slightly attenuated and lost significance [HR .85 (CI .68–1.06)]. Associations were not demonstrated among White adults. CONCLUSIONS. Spirituality associates with reduced ESKD risk among Black adults of low socioeconomic status independent of demographic, psychosocial, and behavioral characteristics. Effect modification by race was not statistically significant.

Governments at national and state levels regulate dialysis care in the United States to ensure safe practices, and continually elevate the quality of care. An objective of these regulatory policies is the independent evaluation of dialysis unit outcomes by patients, caregivers, and the community to facilitate choices as well as to advance equal access to high quality dialysis care. These polices recognized decades ago that it was fundamental to include the patient perspective in the assessment and evaluation of dialysis care quality by requiring both individual and aggregate patient reported outcomes (PROs). Although there is support for integrating the patient perspective, concerns persist about the implementation of these polices including selection of PRO measures, administration timing and reach, as well as interpretation of results including benchmarking to permit comparisons across organizations. The experience from the early adoption of PROs into dialysis policies in conjunction with advances in electronic health records, personal data capture and monitoring, and analytics is poised to address these concerns. The dialysis community has the opportunity to lead the way in innovation related to PRO implementation not only in kidney disease care, but also for other healthcare conditions or contexts such as oncology, surgical, and acute care.

BACKGROUND: Recent innovations have the potential to disrupt the current paradigm for kidney failure treatment. The US Food and Drug Administration is committed to incorporating valid scientific evidence about how patients weigh the benefits and risks of new devices into their decision making, but to date, premarket submission of patient preference information (PPI) has been limited for kidney devices. With input from stakeholders, we developed a survey intended to yield valid PPI, capturing how patients trade off the potential benefits and risks of wearable dialysis devices and in-center hemodialysis. METHODS: We conducted concept elicitation interviews with individuals receiving dialysis to inform instrument content. After instrument drafting, we conducted two rounds of pretest interviews to evaluate survey face validity, comprehensibility, and perceived relevance. We pilot tested the survey with in-center hemodialysis patients to assess comprehensibility and usability further. Throughout, we used participant input to guide survey refinements. RESULTS: Thirty-six individuals receiving in-center or home dialysis participated in concept elicitation (N=20) and pretest (N=16) interviews. Participants identified reduced fatigue, lower treatment burden, and enhanced freedom as important benefits of a wearable device, and many expressed concerns about risks related to device disconnection—specifically bleeding and infection. We drafted a survey that included descriptions of the risks of serious bleeding and serious infection and an assessment of respondent willingness to wait for a safer device. Input from pretest interviewees led to various instrument modifications, including treatment descriptions, item wording, and risk-level explanations. Pilot testing of the updated survey among 24 in-center hemodialysis patients demonstrated acceptable survey comprehensibility and usability, although 50% of patients required some assistance. CONCLUSIONS: The final survey is a 54-item web-based instrument that will yield estimates of the maximal acceptable risk for the described wearable device and willingness to wait for wearable devices with lower risk.

Introduction: Peritoneal dialysis (PD) catheter complications reduce quality of life and increase risks for hospitalizations, for unplanned transitions to haemodialysis and for death. Patient PD catheter management is crucial for safe, sustained PD. Patient perspectives on strategies for living with PD and using a PD catheter may inform efforts to reduce PD catheter complications, increase individual patient PD modality persistence, and thus increase overall home dialysis prevalence. Methods: We interviewed 32 adult PD patients in Nashville, Tennessee. Qualitative analyses included (1) isolation of themes, (2) development of a coding system and (3) creation of a conceptual framework using an inductive–deductive approach. Results: Challenges identified by patients as important included drain pain, difficulty eating and sleeping, and fear of peritonitis. Coping strategies included repositioning while draining, adjusting eating patterns, and development of PD patient and helper knowledge and confidence, especially at home after initial training. Patients described a trial-and-error iterative process of trying multiple strategies with input from multiple sources, which led to individualised solutions. Conclusions: The trial-and-error process may be crucial for maintaining PD. Individual patient success with PD may be promoted by creating expectations during training that a solution may require multiple attempts, and by a reimbursement policy that supports robust nursing support for safe progression through the trial-and-error process, particularly in the first few months for incident patients. Interventions to support patient motivation and optimal coping behaviour may also support an increase in PD modality duration for individual patients, and thus increase overall PD prevalence.

In health care, patients must possess knowledge to understand their treatment options, confidence to communicate effectively with providers, and skills to apply this information to experience the best health outcomes. This combination of knowledge, confidence, and skills, collectively referred to as

Shared decision making (SDM) has been advocated to improve patient care, patient decision acceptance, patient-provider communication, patient motivation, adherence, and patient reported outcomes. Documentation of SDM is endorsed in several society guidelines and is a condition of reimbursement for selected cardiovascular and cardiac arrhythmia procedures. However, many clinicians argue that SDM already occurs with clinical encounter discussions or the process of obtaining informed consent and note the additional imposed workload of using and documenting decision aids without validated tools or evidence that they improve clinical outcomes. In reality, SDM is a process and can be done without decision tools, although the process may be variable. Also, SDM advocates counter that the low-risk process of SDM need not be held to the high bar of demonstrating clinical benefit and that increasing the quality of decision making should be sufficient. Our review leverages a multidisciplinary group of experts in cardiology, cardiac electrophysiology, epidemiology, and SDM, as well as a patient advocate. Our goal is to examine and assess SDM methodology, tools, and available evidence on outcomes in patients with heart rhythm disorders to help determine the value of SDM, assess its possible impact on electrophysiological procedures and cardiac arrhythmia management, better inform regulatory requirements, and identify gaps in knowledge and future needs.

Increasing home dialysis prevalence is an international priority. Many patients start peritoneal dialysis, then transition to hemodialysis after complications. New strategies are needed to support modality persistence. Health mindset refers to individual belief about capacity to change to improve health. Mindset was measured in a cross-section of 101 adult peritoneal dialysis patients from April 2019 to June 2020. The Health Mindset Scale was administered to characterize the continuum of fixed vs. growth mindset with respect to health. Health literacy and health self-efficacy were also assessed. Participants were 43% female, 32% African American, and 42% diabetic. Health mindset scores were skewed toward growth (range 3–18), with average (SD) 12.83 (4.2). Growth mindset was strongly associated with health self-efficacy. Adults receiving peritoneal dialysis report health mindset variation. Growth mindset and health self-efficacy correlation suggests measurement of similar constructs, demonstrating convergent validity. The Health Mindset Scale may identify individuals who could benefit from targeted interventions to improve mindset, and foster peritoneal dialysis modality persistence.

OBJECTIVE Patient activation is the knowledge, skills, and confidence to manage one's health; parent activation is a comparable concept related to a parent's ability to manage a child's health. Activation in adults is a modifiable risk factor and associated with clinical outcomes and health care utilization. We examined activation in parents of hospitalized newborns observing temporal trends and associations with sociodemographic characteristics, neonate characteristics, and outcomes. STUDY DESIGN Participants included adult parents of neonates admitted to a level-IV neonatal intensive care unit in an academic medical center. Activation was measured with the 10-item Parent version of the Patient Activation Measure (P-PAM) at admission, discharge, and 30 days after discharge. Associations with sociodemographic variables, health literacy, clinical variables, and health care utilization were evaluated. RESULTS A total of 96 adults of 64 neonates were enrolled. The overall mean P-PAM score on admission was 81.8 (standard deviation [SD] = 18), 88.8 (SD = 13) at discharge, and 86.8 (SD = 16) at 30-day follow-up. Using linear mixed regression model, P-PAM score was significantly associated with timing of measurement. Higher P-PAM scores were associated with higher health literacy (p = 0.002) and higher in mothers compared to fathers (p = 0.040). There were no significant associations of admission P-PAM scores with sociodemographic characteristics. Parents of neonates who had a surgical diagnosis had a statistically significant (p = 0.003) lower score than those who did not. There were no associations between discharge P-PAM scores and neonates' lengths of stay or other indicators of illness severity. CONCLUSION Parental activation in the NICU setting was higher than reported in the adult and limited pediatric literature; scores increased from admission to discharge and 30-day postdischarge. Activation was higher in mothers and parents with higher health literacy. Additional larger scale studies are needed to determine whether parental activation is associated with long-term health care outcomes as seen in adults. KEY POINTS · Little is known about activation in parents of neonates.. · Activation plays a role in health outcomes in adults.. · Larger studies are needed to explore parent activation..

Background: The Los Angeles Barbershop Blood Pressure Study (LABBPS) demonstrated that collaboration between barbers and pharmacists delivering hypertension management could significantly improve blood pressure as well as access to care. It is unknown if this model can be translated to other locations. This single-arm, proof-of-concept pilot study tested the development and implementation of a similar protocol in Nashville, TN (NCT04232124). Methods: Between 2019 and 2021, community stakeholders, clinicians, investigators, and the LABBPS team convened to adapt the study design and protocol. Established barbershops with barbers willing to be trained on study procedures were recruited as study sites. Non-Hispanic Black male clients, aged 35-79 years with systolic blood pressure (SBP) > 140 mmHg on two screening days were eligible for participation. Enrolled participants met with a pharmacist for lifestyle and medication management at least once monthly for a six-month period. Barbers measured blood pressure during haircuts for additional monitoring. Results: Eight barbershops in business for an average of 20 (± 5) years participated in the trial. Barbers from each shop (range: 1-4) were trained. A total of 419 clients completed screening visit 1, 82 were eligible and 52 (12%) completed visit 2. We enrolled 36, with 30 completing the initial clinical visit and 27 had complete data at 6-months. Participants were on average age 50 (± 10) years, had a body mass index 33 (± 6), 44% were currently smoking, 52% with high school or less education, and 56% reported current primary care. Baseline BP 157.7±17.1/ 95.1±13.9 mmHg improved to 125.7±11.9/75.6±9.5, a change of -32.1±21.6/ -19.5±14.1, respectively. At 6-months 85% of the group had a BP Conclusion: Implementation of the barber-pharmacist model of hypertension management and care delivery improved BP control among hypertensive Black men in Nashville. Lessons learned regarding adaptation overcoming unforeseen barriers will inform expansion into additional naïve locations for future research.

INTRODUCTION AND OBJECTIVE:The experience for patients who make a selection between observation or surgery for renal calculi has not been well established. We compared the experiences of patients w...

Shared decision making (SDM) improves the likelihood that patients will receive care in a manner consistent with their priorities. To facilitate SDM, decision aids (DA) are commonly used, both to prepare a patient before their clinician visit, as well as to facilitate discussion during the visit. However, the relative efficacy of patient-focused or encounter-based DAs on SDM and patient outcomes remains largely unknown. We aim to directly estimate the comparative effectiveness of two DA's on SDM observed in encounters to discuss stroke prevention strategies in patients with atrial fibrillation (AF).The study aims to recruit 1200 adult patients with non-valvular AF who qualify for anticoagulation therapy, and their clinicians who manage stroke prevention strategies, in a 2x2 cluster randomized multi-center trial at six sites. Two DA's were developed as interactive, online, non-linear tools: a patient decision aid (PDA) to be used by patients before the encounter, and an encounter decision aid (EDA) to be used by clinicians with their patients during the encounter. Patients will be randomized to PDA or usual care; clinicians will be randomized to EDA or usual care.Primary outcomes are quality of SDM, patient decision making, and patient knowledge. Secondary outcomes include anticoagulation choice, adherence, and clinical events.This trial is the first randomized, head-to-head comparison of the effects of an EDA versus a PDA on SDM. Our results will help to inform future SDM interventions to improve patients' AF outcomes and experiences with stroke prevention strategies.

This cross-sectional study of 56 dialysis providers from 3 dialysis clinics examined providers’ attitudes and perception of autonomy support for patients’ medication adherence behaviors. Respondents completed surveys assessing attitudes and perception of autonomy support. Compared to all other provider types, physicians and nurse practitioners (MD/NP) thought it was “less true” that phosphate binder medications are very important for dialysis patients (MD/NP vs others: 5.1 [1.4] vs 6.1 [1.1]; P = 0.02). More dialysis technicians (19%) offered the highest level of support. Attitudes and perception of autonomy support for medication adherence are suboptimal, vary by dialysis provider type, and are targets for quality improvement in dialysis care. This study addresses critical gap in existing knowledge about these two novel provider-based psychosocial factors and their potential impact on phosphate binder medication adherence.

Introduction The Southern Community Cohort Study is a prospective study of low socioeconomic status (SES) blacks and whites from the southeastern US, where the burden of end-stage renal disease (ESRD) and its risk factors are high. We tested whether the 2.4-fold elevated risk of ESRD we previously observed in blacks compared to whites was explained by differences in baseline kidney function. Methods We conducted a case-cohort study of incident ESRD cases (n = 737) with stored blood and a probability sampled subcohort (n = 4238) and calculated estimated glomerular filtration rate (eGFR) from serum creatinine. 86% of participants were enrolled from community health centers in medically underserved areas and 14% from the general population in 12 states in the southeastern United States. Incident ESRD after entry into the cohort was ascertained by linkage of the cohort with the US Renal Data System (USRDS). Results Median (25th, 75th percentile) eGFR at baseline was 63.3 (36.0, 98.2) ml/min/1.73m2 for ESRD cases and 103.2 (86.0, 117.9) for subcohort. Black ESRD cases had higher median (25th, 75th) eGFR [63.3 (35.9, 95.9)] compared to whites [59.1 (39.4, 99.2)]. In multivariable Cox models accounting for sampling weights, baseline eGFR was a strong predictor of ESRD risk, and an interaction with race was detected (P = 0.029). The higher ESRD risk among blacks relative to whites persisted (hazard ratio: 2.58; 95% confidence interval: 1.65, 4.03) after adjustment for eGFR. Conclusion In this predominantly lower SES cohort, the racial disparity in ESRD risk is not explained by differences in baseline kidney function. Electronic supplementary material The online version of this article (10.1186/s12882-019-1502-z) contains supplementary material, which is available to authorized users.

Variants of the APOL1 gene, which encodes apo L1, confer increased risk for CKD, ESKD, and reduced cadaveric kidney transplant survival, and likely contribute to kidney disease disparities among African American individuals in the United States. To date, few studies have gathered African Americans

In the original publication of the article, the majority of changes stem from misclassification of “medium adherence” when using the Morisky Medication Adherence Scale (MMAS-8) and not using the correct scoring algorithm for one of the responses when calculating MMAS-8 total scores.

Background: Acute kidney injury (AKI) survivors are at risk for chronic kidney disease, recurrent AKI, and cardiovascular disease. The transition from hospital to ambulatory care is an opportunity to reduce these sequelae by launching self-care plans through effective patient education. How well AKI survivors are informationally prepared to apply kidney-specific self-care is unknown. The purpose of this study was to identify awareness and disease-specific knowledge among AKI survivors. Methods: We performed a cross-sectional survey of AKI-related awareness and knowledge in 137 patients with Kidney Disease Improving Global Outcomes Stage II or III AKI near the time of hospital discharge. Patients were asked (1) “Did you experience AKI while in the hospital?” and (2) “Do you have a problem with your kidney health?” Objective knowledge of AKI was evaluated with a 15-item adapted version of the validated Kidney Knowledge Survey that included topics such as common causes, risk factors, and how AKI is diagnosed. Results: Median age was 54 (interquartile range 43–63) and 81% were white. Eighty percent of patients were unaware that they had experienced AKI and 53% were both unaware they had experienced AKI or had a “problem with their kidneys.” Multivariable logistic regression identified being male and lack of nephrology consult as predictors of unawareness with ORs of 3.92 (95% CI 1.48–10.33) and 5.10 (95% CI 1.98–13.13), respectively. Less than 50% recognized nonsteroidal anti-inflammatory drugs, contrast, or phosphate-based cathartics as risk factors for AKI. Two-thirds of patients did not agree that they knew a lot about AKI and more than 80% desired more information. Conclusions: Most patients with moderate to severe AKI are unaware of their condition, lack understanding of risk factors for recurrent AKI, and desire more information. Patient-centered communication to optimize awareness, understanding, and care will require coordinated educational strategies throughout the continuum of AKI care.

Background: Apolipoprotein A1 (APOL1) gene variants occurring in people of West African descent contribute to the greater burden of kidney disease among African Americans. These variants are associated with increased risk of nondiabetic nephropathy, more rapid progression of chronic kidney disease, and shorter survival of donor kidneys after transplantation. However, only a minority of people with APOL1-associated risk develops kidney disease and specific clinical measures to address APOL1-associated risk are lacking. Given these uncertainties, we sought to engage members of the African American public in discussions with other stakeholders about the appropriate use of APOL1 testing. Methods: Formative interviews with community members, researchers, and clinicians in Seattle WA, Nashville TN, and Jackson MS, provided baseline information about views toward APOL1 testing and informed the design of 3 community-based deliberations among African Americans. A national meeting held in March 2018 included 13 community members, 7 scientific advisors and 26 additional researchers, clinicians, bioethicists, patient advocates, and representatives from professional organizations and federal funding agencies. Using small break-out and plenary discussion, the group agreed on recommendations based on current knowledge about APOL1-associated risk. Results: Meeting outcomes included recommendations to develop educational materials about APOL1 for community members and clinicians; to offer APOL1 research results to participants; and on the use of APOL1testing in kidney transplant programs. The group recommended against the routine offer of APOL1 testing in clinical care. Areas of disagreement included whether kidney transplant programs should require APOL1 testing of prospective living donors or bar individuals with APOL1 risk from donating kidneys and whether testing should be available on request in routine clinical care. Conclusion: We recommend continued discussion among stakeholders and concerted efforts to ensure active and informed participation of members of the affected community to guide research on APOL1 and kidney disease.

APOL1 risk alleles are associated with increased cardiovascular and chronic kidney disease (CKD) risk. It is unknown whether knowledge of APOL1 risk status motivates patients and providers to attain recommended blood pressure (BP) targets to reduce cardiovascular disease.Multicenter, pragmatic, randomized controlled clinical trial.6650 individuals with African ancestry and hypertension from 13 health systems.APOL1 genotyping with clinical decision support (CDS) results are returned to participants and providers immediately (intervention) or at 6 months (control). A subset of participants are re-randomized to pharmacogenomic testing for relevant antihypertensive medications (pharmacogenomic sub-study). CDS alerts encourage appropriate CKD screening and antihypertensive agent use.Blood pressure and surveys are assessed at baseline, 3 and 6 months. The primary outcome is change in systolic BP from enrollment to 3 months in individuals with two APOL1 risk alleles. Secondary outcomes include new diagnoses of CKD, systolic blood pressure at 6 months, diastolic BP, and survey results. The pharmacogenomic sub-study will evaluate the relationship of pharmacogenomic genotype and change in systolic BP between baseline and 3 months.To date, the trial has enrolled 3423 participants.The effect of patient and provider knowledge of APOL1 genotype on systolic blood pressure has not been well-studied. GUARDD-US addresses whether blood pressure improves when patients and providers have this information. GUARDD-US provides a CDS framework for primary care and specialty clinics to incorporate APOL1 genetic risk and pharmacogenomic prescribing in the electronic health record.ClinicalTrials.govNCT04191824.

(1) Background: Clinical decision support (CDS) is a vitally important adjunct to the implementation of pharmacogenomic-guided prescribing in clinical practice. A novel CDS was sought for the APOL1, NAT2, and YEATS4 genes to guide optimal selection of antihypertensive medications among the African American population cared for at multiple participating institutions in a clinical trial. (2) Methods: The CDS committee, made up of clinical content and CDS experts, developed a framework and contributed to the creation of the CDS using the following guiding principles: 1. medical algorithm consensus, 2. actionability, 3. context-sensitive triggers, 4. workflow integration, 5. feasibility, 6. interpretability, 7. portability, and 8. discrete reporting of lab results. (3) Results: Utilizing the principle of discrete patient laboratory and vital information, a novel CDS for APOL1, NAT2, and YEATS4 was created for use in a multi-institutional trial based on a medical algorithm consensus. The alerts are actionable and easily interpretable, clearly displaying the purpose and recommendations with pertinent laboratory results, vitals and links to ordersets with suggested antihypertensive dosages. Alerts were either triggered immediately once a provider starts to order relevant antihypertensive agents or strategically placed in workflow-appropriate general CDS sections in the electronic health record (EHR). Detailed implementation instructions were shared across institutions to achieve maximum portability. (4) Conclusions: Using sound principles, the created genetic algorithms were applied across multiple institutions. The framework outlined in this study should apply to other disease-gene and pharmacogenomic projects employing CDS.

Background While catheters are often thought the result of emergency hemodialysis (HD) initiation among patients with little or no pre-dialysis nephrology care, the role of patient level of engagement in care and modality decision-making have not been fully explored. Methods This is a retrospective medical record review of adults (age 18–89 years) who received care in academically affiliated private practice, public hospital, or Veterans Administration settings prior to initiating HD with a catheter between 10/1/2011 and 9/30/2012. Primary predictors were level of patient engagement in nephrology care within 6 months of HD initiation and timing of modality decision-making. Primary outcomes were provider action (referral) and any patient action (evaluation by a vascular surgeon, vein mapping or vascular surgery) toward [arteriovenous fistula or graft, (AVF/AVG)] creation. Results Among 92 incident HD patients, 66% (n = 61) initiated HD via catheter, of whom 34% (n = 21) had ideal engagement in care but 42% (n = 25) had no documented decision. Providers referred 48% (n = 29) of patients for AVF/AVG, of whom 72% (n = 21) took any action. Ideal engagement in care predicted provider action (adjusted OR 13.7 [95% CI 1.08, 175.1], p = 0.04), but no level of engagement in care predicted patient action (p > 0.3). Compared to patients with no documented decision, those with documented decisions within 3, 3–12, or more than 12 months before initiating dialysis were more likely to have provider action toward AVF/AVG (adjusted OR [95% CI]: 9.0 [1.4,55.6], p = 0.2, 37.6 [3.3423.4] p = 0.003, and 4.8 [0.8, 30.6], p = 0.1, respectively); and patient action (adjusted OR [95% CI]: 18.7 [2.3, 149.0], p = 0.006, 20.4 [2.6, 160.0], p = 0.004, and 6.2 [0.9, 44.0], p = 0.07, respectively). Conclusions Timing of patient modality decision-making, but not level of engagement in pre-dialysis nephrology care, was predictive of patient and provider action toward AVF/AVG Interventions addressing patients’ psychological preparation for dialysis are needed.

Movement of solutes across the peritoneum allows for the use of peritoneal dialysis to treat kidney failure. However, there is a large inter-individual variability in the peritoneal solute transfer rate (PSTR). Here, we tested the hypothesis that common genetic variants are associated with variability in PSTR. Of the 3561 participants from 69 centers in six countries, 2850 with complete data were included in a genome-wide association study. PSTR was defined as the four-hour dialysate/plasma creatinine ratio from the first peritoneal equilibration test after starting PD. Heritability of PSTR was estimated using genomic-restricted maximum-likelihood analysis, and the association of PSTR with a genome-wide polygenic risk score was also tested. The mean four-hour dialysate/plasma creatinine ratio in participants was 0.70. In 2212 participants of European ancestry, no signal reached genome-wide significance but 23 single nucleotide variants at four loci demonstrated suggestive associations with PSTR. Meta-analysis of ancestry-stratified regressions in 2850 participants revealed five single-nucleotide variants at four loci with suggestive correlations with PSTR. Association across ancestry strata was consistent for rs28644184 at the KDM2B locus. The estimated heritability of PSTR was 19%, and a permuted model polygenic risk score was significantly associated with PSTR. Thus, this genome-wide association study of patients receiving peritoneal dialysis bolsters evidence for a genetic contribution to inter-individual variability in PSTR.