Feasibility of a Peer Mentor Training Program for Patients Receiving Hemodialysis: An Educational Program Evaluation.

Rationale and Objective: The 'PEER-HD' multicenter study tests the effectiveness of peer mentorship to reduce hospitalizations in patients receiving maintenance hemodialysis. In this study, we describe the feasibility, efficacy, and acceptability of the mentor training program. Study Design: Educational program evaluation including the following aspects: (1) description of training content, (2) quantitative analysis of feasibility and acceptability of the program, and (3) quantitative pre-post analysis of efficacy of the training to impart knowledge and self-efficacy. Setting and Participants: Data were collected using baseline clinical and sociodemographic questionnaires from mentor participants enrolled in Bronx, NY, and Nashville, TN, themselves receiving maintenance hemodialysis. Analytical Approach: The outcome variables were the following: (1) feasibility measured by training module attendance and completion, (2) efficacy of the program to impart knowledge and self-efficacy measured by kidney knowledge and self-efficacy surveys, and (3) acceptability as measured by an 11-item survey of trainer performance and module content. Results: The PEER-HD training program included 4 2-hour modules that covered topics including dialysis-specific knowledge and mentorship skills. Of the 16 mentor participants, 14 completed the training program. There was complete attendance to all training modules, though some patients required flexibility in scheduling and format. Performance on posttraining quizzes was consistent with high knowledge (mean scores ranged from 82.0%-90.0% correct). Mean dialysis-specific knowledge scores trended higher post training than at baseline though this difference was not statistically significant (90.0% vs 78.1%; P = 0.1). No change in mean self-efficacy scores was demonstrated from before to after training, among mentor participants (P = 0.2). Program evaluation assessments of acceptability were favorable [mean of all patient scores (0-4) within each module ranged from 3.43-3.93]. Limitations: Small sample size. Conclusions: The PEER-HD mentor training program required accommodation to patients' schedules but was feasible. Participants rated the program favorably, and although the comparison of performance on knowledge assessments post- and pre-program showed uptake of knowledge, this was not statistically significant.

Patient perspectives on peritoneal dialysis (PD) and the PD catheter: Strategies and Solutions.

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.

Context Matters: A Qualitative Synthesis of Adherence Literature for People on Hemodialysis.

BACKGROUND: Patients with ESKD treated with hemodialysis in the United States have persistently higher rates of nonadherence compared with patients in other developed countries. Nonadherence is associated with an increased risk of death and higher medical expenditure. There is an urgent need to address it with feasible, effective interventions as the prevalence of patients on hemodialysis in the United States continues to grow. However, published adherence interventions demonstrate limited long-term efficacy. METHODS: We conducted a synthesis of qualitative studies on adherence to hemodialysis treatment, medications, and fluid and dietary restrictions to identify gaps in published adherence interventions, searching PubMed, CINAHL, PsychInfo, Embase, and Web of Science databases. We analyzed qualitative data with a priori codes derived from the World Health Organization's adherence framework and subsequent codes from thematic analysis. RESULTS: We screened 1775 articles and extracted qualitative data from 12. The qualitative data revealed 20 factors unique to hemodialysis across the World Health Organization's five dimensions of adherence. In addition, two overarching themes emerged from the data: (1) adherence in the context of patients' whole lives and (2) dialysis treatment as a double-edged sword. Patient-level factors reflected in the qualitative data extended beyond knowledge about hemodialysis treatment or motivation to adhere to treatment. Patients described a profound grieving process over the loss of their "old self" that impacted adherence. They also navigated complex challenges that could be exacerbated by social determinants of health as they balanced treatment, life tasks, and social roles. CONCLUSIONS: This review adds to the growing evidence that one-size-fits-all approaches to improving adherence among patients on hemodialysis are inadequate. Adherence may improve when routine care incorporates patient context and provides ongoing support to patients and families as they navigate the logistical, physical, and psychological hardships of living with dialysis. New research is urgently needed to guide a change in course.

Interventions Incorporating Therapeutic Alliance to Improve Medication Adherence in Black Patients with Diabetes, Hypertension and Kidney Disease: A Systematic Review.

Background: Black Americans have a disproportionately increased risk of diabetes, hypertension, and kidney disease, and higher associated morbidity, mortality, and hospitalization rates than their White peers. Structural racism amplifies these disparities, and negatively impacts self-care including medication adherence, critical to chronic disease management. Systematic evidence of successful interventions to improve medication adherence in Black patients with diabetes, hypertension, and kidney disease is lacking. Knowledge of the impact of therapeutic alliance, ie, the unique relationship between patients and providers, which optimizes outcomes especially for minority populations, is unclear. The role and application of behavioral theories in successful development of medication adherence interventions specific to this context also remains unclear. Objective: To evaluate the existing evidence on the salience of a therapeutic alliance in effective interventions to improve medication adherence in Black patients with diabetes, hypertension, or kidney disease. Data Sources: Medline (via PubMed), EMBASE (OvidSP), Cumulative Index of Nursing and Allied Health Literature (CINAHL) (EBSCOhost), and PsycINFO (ProQuest) databases. Review Methods: Only randomized clinical trials and pre/post intervention studies published in English between 2009 and 2022 with a proportion of Black patients greater than 25% were included. Narrative synthesis was done. Results: Eleven intervention studies met the study criteria and eight of those studies had all-Black samples. Medication adherence outcome measures were heterogenous. Five out of six studies which effectively improved medication adherence, incorporated therapeutic alliance. Seven studies informed by behavioral theories led to significant improvement in medication adherence. Discussion/Conclusion: Study findings suggest that therapeutic alliance-based interventions are effective in improving medication adherence in Black patients with diabetes and hypertension. Further research to test the efficacy of therapeutic alliance-based interventions to improve medication adherence in Black patients should ideally incorporate cultural adaptation, theoretical framework, face-to-face delivery mode, and convenient locations.

Systematic review of international studies evaluating MDRD and CKD-EPI estimated glomerular filtration rate (eGFR) equations in Black adults.

Use of race adjustment in estimating glomerular filtration rate (eGFR) has been challenged given concerns that it may negatively impact the clinical care of Black patients, as it results in Black patients being systematically assigned higher eGFR values than non-Black patients. We conducted a systematic review to assess how well eGFR, with and without race adjustment, estimates measured GFR (mGFR) in Black adults globally. A search across multiple databases for articles published from 1999 to May 2021 that compared eGFR to mGFR and reported outcomes by Black race was performed. We included studies that assessed eGFR using the Modification of Diet in Renal Disease (MDRD) and Chronic Kidney Disease Epidemiology Collaboration (CKD-EPICr) creatinine equations. Risk of study bias and applicability were assessed with the QUality Assessment of Diagnostic Accuracy Studies-2. Of 13,167 citations identified, 12 met the data synthesis criteria (unique patient cohorts in which eGFR was compared to mGFR with and without race adjustment). The studies included patients with and without kidney disease from Africa (n = 6), the United States (n = 3), Europe (n = 2), and Brazil (n = 1). Of 11 CKD-EPI equation studies, all assessed bias, 8 assessed accuracy, 6 assessed precision, and 5 assessed correlation/concordance. Of 7 MDRD equation studies, all assessed bias, 6 assessed accuracy, 5 assessed precision, and 3 assessed correlation/concordance. The majority of studies found that removal of race adjustment improved bias, accuracy, and precision of eGFR equations for Black adults. Risk of study bias was often unclear, but applicability concerns were low. Our systematic review supports the need for future studies to be conducted in diverse populations to assess the possibility of alternative approaches for estimating GFR. This study additionally provides systematic-level evidence for the American Society of Nephrology-National Kidney Foundation Task Force efforts to pursue other options for GFR estimation.

Dispositional optimism and optimistic bias: Associations with cessation motivation, confidence, and attitudes.

OBJECTIVE: To test whether 2 conceptually overlapping constructs, dispositional optimism (generalized positive expectations) and optimistic bias (inaccurately low risk perceptions), may have different implications for smoking treatment engagement. METHOD: Predominantly Black, low-income Southern Community Cohort study smokers (n = 880) self-reported dispositional optimism and pessimism (Life Orientation Test-Revised subscales: 0 = neutral, 12 = high optimism/pessimism), comparative lung cancer risk (Low/Average/High), and information to calculate objective lung cancer risk (Low/Med/High). Perceived risk was categorized as accurate (perceived = objective), optimistically-biased (perceived < objective), or pessimistically-biased (perceived > objective). One-way ANOVAs tested associations between dispositional optimism/pessimism and perceived risk accuracy. Multivariable logistic regressions tested independent associations of optimism/pessimism and perceived risk accuracy with cessation motivation (Low/High), confidence (Low/High), and precision treatment attitudes (Favorable/Unfavorable), controlling for sociodemographics and nicotine dependence. RESULTS: Mean dispositional optimism/pessimism scores were 8.41 (SD = 2.59) and 5.65 (SD = 3.02), respectively. Perceived lung cancer risk was 38% accurate, 27% optimistically-biased, and 35% pessimistically-biased. Accuracy was unrelated to dispositional optimism (F(2, 641) = 1.23, p = .29), though optimistically-biased (vs. pessimistically-biased) smokers had higher dispositional pessimism (F(2, 628) = 3.17, p = .043). Dispositional optimism was associated with higher confidence (Adjusted odds ratio [AOR] = 1.71, 95% CI [1.42, 2.06], p < .001) and favorable precision treatment attitudes (AOR = 1.66, 95% CI [1.37, 2.01], p < .001). Optimistically-biased (vs. accurate) risk perception was associated with lower motivation (AOR = .64, 95% CI [.42, .98], p = .041) and less favorable precision treatment attitudes (AOR = .59, 95% CI [.38, .94], p = .029). CONCLUSIONS: Dispositional optimism and lung cancer risk perception accuracy were unrelated. Dispositional optimism was associated with favorable engagement-related outcomes and optimistically-biased risk perception with unfavorable outcomes, reinforcing the distinctiveness of these constructs and their implications for smoking treatment. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Etiopathogenesis of kidney disease in minority populations and an updated special focus on treatment in diabetes and hypertension.

Diabetes and hypertension are the most common causes of chronic kidney disease (CKD) in the general population as well as in the Black and African American population, who also suffer from high rates of CKD and CKD progression compared to the White population. Progression of CKD can lead to kidney failure, and patients with progressive kidney disease have a high risk of premature mortality, particularly from cardiovascular disease. Screening for early detection of CKD is important as it facilitates the initiation of medications that have been shown to delay the progression of diabetes-related as well as non-diabetes-related CKD, and reduce rates of death from both kidney and cardiovascular disease. The potential adverse effects from use of some of the newer reno- and cardio-protective glucose-lowering medications, such as the sodium glucose cotransporter-2 inhibitors, may be effectively avoided with detailed patient education and monitoring by the healthcare provider. It is important to note that lifestyle modification including regular exercise, diet, and smoking cessation are first-line in the management of diabetes and hypertension. When CKD occurs, co-management by providers using a comprehensive strategy may avert early complications and facilitate appropriate early referral for nephrology specialty care.

African Americans' Hemodialysis Treatment Adherence Data Assessment and Presentation: A Precision-Based Paradigm Shift to Support Quality Improvement Activities.

RATIONALE & OBJECTIVE: Thrice-weekly hemodialysis can result in adequate urea clearance; however, the morbidity and mortality rates of patients treated with maintenance dialysis remain unacceptably high, partly because of nonadherence. African Americans have a higher prevalence of kidney failure treated with dialysis, greater dialysis nonadherence, and higher odds of hospitalization. We hypothesized that more precise ways of assessing dialysis treatment adherence will reflect the severity of nonadherence, distinguish patterns of nonadherence, and inform the design of personalized behavioral interventions. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: African American patients receiving hemodialysis for >90 days. EXPOSURE: Hemodialysis. OUTCOME: Dialysis adherence. ANALYTICAL APPROACH: Dialysis attendance data were displayed using a dot plot, categorized based on missed and shortened treatments, and examined for patterns. Descriptive characteristics were reported. In an exploratory analysis, associations between dialysis treatment adherence and participant characteristics were evaluated using ordinary least squares regression. An analysis was performed using missed minutes of dialysis and current metrics for measuring dialysis treatment adherence (ie, missed and shortened treatments). RESULTS: Among 113 African American patients treated with dialysis, 47% were men; the median age was 57 years (interquartile range, 46-70 years), and the median dialysis vintage was 54 months (interquartile range, 22-90 months). With rows ordered based on the total missed minutes of dialysis, the dot plot displayed a decreasing gradient in the severity of nonadherence, with novel dialysis treatment adherence categories termed as follows: consistent underdialysis, inconsistent dialysis, and consistent dialysis. Distinct patterns of nonadherence and heterogeneity emerged within these categories. Older age was consistently associated with better adherence, as determined by the analyses performed using the total missed minutes of dialysis as well as missed and shortened treatments. LIMITATIONS: The study findings, although replicable and paradigm-shifting, might be limited by the short timeline, focus on adherence data specific to African American patients treated with dialysis, and restriction to dialysis units affiliated with 1 academic center. CONCLUSIONS: This study presents more precise and novel ways of measuring and displaying dialysis treatment adherence. The findings introduce a more personalized approach for evaluating actual dialysis uptake. Identification of unique patterns of adherence behavior is important to inform the design of effective behavioral interventions and improve outcomes for vulnerable African American patients treated with dialysis.

Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.

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.

A Cross-sectional Study of Fixed and Growth Mindset in Adult Peritoneal Dialysis Patients.

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.

The Role of Place in Disparities Affecting Black Men Receiving Hemodialysis.

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.

Psychological Adaptation to Serious Illness: A Qualitative Study of Culturally Diverse Patients With Advanced Chronic Kidney Disease.

CONTEXT: Psychological distress is associated with adverse health outcomes in serious illness and magnified among patients of low socioeconomic status. Aspects of one's culture, such as religion and spirituality, can influence these patients' coping response to distress. Advanced chronic kidney disease (CKD) is a serious illness that disproportionately affects patients of low socioeconomic status, but a theory-based understanding of this group's lived experience of CKD is lacking. OBJECTIVES: We explored the cognitions, emotions, and coping behaviors of patients with CKD with emphasis on those of low socioeconomic status. We further inquired into any influences of religion or spirituality. METHODS: We interviewed 50 English-speaking or Spanish-speaking adults with advanced CKD from three medical centers in Nashville, Tennessee. Analyses occurred with isolation of themes; development of a coding system; and creation of a conceptual framework using an inductive-deductive approach. RESULTS: Median age was 65 years; median annual income was $17,500 per year; and 48% of participants had not progressed beyond high school. Key beliefs (awareness of mortality and lack of control) influenced patients' emotions (existential distress in the form of death anxiety, prognostic uncertainty, and hopelessness) and coping behaviors (acceptance, avoidance, emotion regulation via spirituality, and seeking socialsupport via a religious community). CONCLUSION: Individuals with advanced CKD and low socioeconomic status lack control over disease progression, experience death anxiety and existential distress, and emphasize spirituality to cope. Our study identifies novel components for a psychotherapeutic intervention for patients with advanced CKD at high risk for adverse health outcomes.

Provider Attitudes and Support of Patients' Autonomy for Phosphate Binder Medication Adherence in ESRD.

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.

Interventions Incorporating Therapeutic Alliance to Improve Hemodialysis Treatment Adherence in Black Patients with End-Stage Kidney Disease (ESKD) in the United States: A Systematic Review.

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.

At the Research-Clinical Interface: Returning Individual Genetic Results to Research Participants.

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.

Incorporating patient-reported outcomes (PROs) into dialysis policy: Current initiatives, challenges, and opportunities.

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.