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Older Latino adults (aged 65+years) comprise the fastest growing minoritized group among the older population in the United States and experience a disproportionate burden of kidney failure as well as disparities in kidney care compared with non-Hispanic White individuals. Despite significant need and barriers uniquely faced by this population, few educational resources or decision aids are available to meet the language and cultural needs of Latino patients. Decision aids are designed to improve knowledge and empower individuals to engage in shared decision making and have been shown to improve decisional quality and goal-concordant care among older patients with chronic kidney disease (CKD). In this commentary, we examine the barriers faced by older Latino people with CKD who must make dialysis initiation decisions. We conclude that there is a need for culturally concordant decision aids tailored for older Latino patients with CKD to overcome barriers in access to care and improve patient-centered care for older Latino CKD patients., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Chronic kidney disease (CKD), a long-term condition in which kidney function declines over time, is a growing global healthcare concern. CKD can have a major impact on the quality of life of patients and their caregivers. Recent research by the International Society of Nephrology highlights that current treatment strategies and policies do not fully address patients' needs. This commentary provides patient insights into the real-life concerns of those who are living with CKD, with main concerns focusing on relationships and support, work and finances, and awareness, prevention, and intervention. Strong support networks are essential for patients and caregivers, but the burden of CKD can make it difficult to maintain personal connections. Limiting disease progression and providing mental health support can help patients and caregivers to maintain their relationships. Work or education can be challenging to manage with CKD; however, employers and educational institutions can create supportive environments that meet the diverse needs of people with CKD. Although delaying disease progression can preserve patient quality of life, people are often unaware of their disease prior to diagnosis, the severity of their CKD, and the risk factors for progression. This presents an opportunity to involve patients in their care by improving education about the benefits of maintaining kidney health. Early identification and holistic intervention could slow disease progression and protect the well-being of patients with CKD and their caregivers. This commentary brings together the diverse perspectives of patients and patient advocacy groups, as well as primary care and specialist healthcare professionals, to advocate for a transformation of CKD management that encourages patient self-care and that prioritizes timely intervention.A patient perspective video and a graphical abstract are available with this article. Addressing the Human Experience of Chronic Kidney Disease: A Call to Transform Kidney Care. Watch Lweendo Hamusankwa discuss his experience of living with chronic kidney disease, from how it impacted his family life to the importance of support networks and patient-facing information. Lweendo advocates for patients to be educated on CKD progression, treatment options, and lifestyle interventions to encourage people to manage their own health and well-being., Competing Interests: Declarations. Conflict of Interest: Ricardo Correa-Rotter has provided consultancy and received fees from AbbVie, AstraZeneca, GlaxoSmithKline, and Boehringer Ingelheim; has lectured for Amgen, Janssen, AstraZeneca, and Boehringer Ingelheim; and has received research support from GlaxoSmithKline, Novo Nordisk, and AstraZeneca. Steven J. Chadban has received payment or honoraria from AstraZeneca, Bayer, and Boehringer Ingelheim for speaker fees and advisory board participation. Laura Christen, Surendra Pentakota, and Petrina Stevens are employees of AstraZeneca. Surendra Pentakota and Petrina Stevens hold stock options. Kelli Collins Damron is an employee of the National Kidney Foundation. Lweendo Hamusankwa and Marisol Robles have no conflicts of interest to disclose. Sarah Jarvis is a Chief Medical Advisor for IBEX Innovations, locum general practitioner, medical broadcaster and former clinical consultant for Patient.info. Sarah Jarvis has received payment or honoraria from AstraZeneca, Boehringer Ingelheim, Lilly, Merck, and Novartis for speaker fees and advisory board participation. Christoph Wanner has provided consultancy to AstraZeneca, Bayer, Boehringer Ingelheim, Eli Lilly and Company, GlaxoSmithKline, and Merck. Ethical Approval: This article is based on author experience and previously published research, and does not contain any new studies with human participants or animals performed by any of the authors. Patient Involvement: Patient authors shared their experience of living with CKD, which informed the key areas of concern (Relationships and Support; Work and Finances; Awareness, Intervention and Prevention of Disease Progression), and also contributed to the planning and development of this commentary., (© 2024. The Author(s).)

Rationale & Objective: Dialysis patient care technicians (PCTs) provide essential, frontline care for patients receiving in-center hemodialysis. We qualitatively explored perceptions of the PCT job role, responsibilities, and training among current PCTs, non-PCT dialysis staff, and patients receiving hemodialysis., Study Design: Focus group study., Setting & Participants: Discussions were conducted in March-May 2023 among US PCTs, non-PCT staff, and patients., Analytical Approach: Thematic analysis was conducted using inductive and deductive strategies., Results: Seven focus groups (N = 36 participants) were conducted (3 with PCTs [n = 19], 2 with non-PCT staff [n = 6], and 2 with patients [n = 11]). Eight themes emerged: (1) value of PCT role is not reflected in job or organizational policies and structures; (2) PCTs play a flexible and often ill-defined role in dialysis clinics; (3) despite being in a position with high risk of burnout, PCTs find ways to persevere and provide high-quality care; (4) PCTs are often perceived as "helpers" or ancillary rather than an integral part of the dialysis care team; (5) PCT job training and qualifications are not standardized and often not commensurate with job expectations and responsibilities; (6) PCT-patient relationships are deeply valued, but boundaries can be fluid and become blurred because of the frequency and nature of dialysis care; (7) dialysis patients and staff are vulnerable to multilevel workplace safety issues; and (8) PCT-staff dynamics have a strong impact on employee morale, clinic efficiency, and patient satisfaction., Limitations: Non-English-speaking participants and physicians were excluded, limiting diversity in perspectives., Conclusions: PCTs play a multifaceted role in dialysis care that is highly valued among patients and staff but not always reflected in actual tasks performed by PCTs, training received by PCTs, or the respect afforded to PCTs. Our findings are actionable and can inform future intervention-based work aimed at improving the PCT role in US hemodialysis care., (© 2024 The Authors.)

Rationale & Objective: Given the high burden of dementia in dialysis patients, the dialysis workforce needs to be prepared to provide high-quality, person-centered dementia care. We explored comfort with and knowledge of dementia among US dialysis care providers., Study Design: Web-based survey., Setting & Participants: Emails were sent to National Kidney Foundation and National Association of Nephrology Technicians/Technologists membership listservs (September 26, 2022-October 22, 2022). In total, 1,121 respondents had complete data for analysis (57%, 35-49 years; 62% female; 62%/22% White/African American) including 81 physicians, 61 advanced practice providers, 230 nurse managers, 260 nurses, 202 social workers, 195 dietitians, and 86 dialysis patient care technicians., Exposures: Provider role, age, tenure, self-reported gender, previous dementia training, and awareness of dementia guidance., Outcomes: Dementia Knowledge (assessed using Dementia Knowledge Assessment Scale [DKAS; score range, 0-25])., Analytic Approach: Characteristics of respondents, comfort with dementia care, and dementia knowledge were summarized and tabulated overall and by role. Robust regression was used to obtain coefficients confidence intervals for the associations between characteristics and DKAS scores, adjusting for role and tenure. Free-text responses to an open-ended question about treating patients with dementia or cognitive impairment were analyzed using thematic analysis., Results: Dementia knowledge among US dialysis providers may be limited (overall DKAS score = 17; range, 13-21 across roles), despite most reporting knowing when patients had dementia (97%) and receiving training in dementia care (62%). Further, training may be inadequate: those who reported receiving dementia training had lower DKAS scores than those who reported not receiving training (β, -3.9; 95% CI, -4.4 to -3.4). Thematic analysis of open-ended responses suggested that the impact of dementia on dialysis care and management and treatment beyond dialysis care are challenging for providers., Limitations: Data were self-reported and limited information was gathered about quality, content, and timing of dementia training received., Conclusion: Many US dialysis care providers had suboptimal dementia knowledge, despite reporting being comfortable with providing dementia care and reporting they received prior training. Qualitative findings indicate complexity among providers regarding comfort with and knowledge of treating patients with cognitive impairment. Targeted training for the dialysis workforce in dementia knowledge and best practices for person-centered dementia care is warranted., (© 2024 The Authors.)

Introduction: Suboptimal dialysis care may be in part due to staff issues such as job dissatisfaction, burnout, work overload, high staff turnover, and inconsistent training. Here, we leveraged data collected in a recent national survey to provide an initial, comprehensive description of current work experiences of US dialysis care providers., Methods: We conducted a cross-sectional survey of 1,240 active US dialysis clinic staff members (physicians, advanced practice providers, nurse managers/clinic coordinators, nurses, social workers, dietitians, and patient care technicians), who were recruited via emails to society membership lists. Respondents were asked about a wide variety of work experiences, including job satisfaction, professional fulfillment, and burnout (Stanford Professional Fulfillment Index), work culture, experiences of hostility and violence, and self-reported medical errors. Responses were summarized overall and compared by clinic role., Results: Most of the survey respondents, representing all 50 US states, were aged 35-49 years (58.3%) or ≥50 years (23.5%), female (60.7%), and white (59.8%; 23.1% black, and 10.0% Asian); 82.1% had been in their current role for at least 1 year. Most US dialysis staff responding to our survey reported being generally satisfied with their jobs (mean rating of 7.9 on 0-10 scale), but only 54.4% met criteria for professional fulfillment, and 32.8% met criteria for burnout, driven by high scores in the work exhaustion domain. Related issues, including high workloads, lack of respect (including experiences of violence and hostility), lack of autonomy, and suboptimal patient environments (in terms of both safety and patient centeredness), were commonly reported among dialysis care providers, although their prevalence often differed by provider type., Conclusion: Our results suggest that the dialysis workforce may be at a critical point. Preventing further staff burnout, which could lead to even greater staffing shortages and worse working conditions among those who continue to provide dialysis care, is essential., (© 2023 S. Karger AG, Basel.)

Background: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement., Objective: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19?, Design: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement., Participants: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript., Approach: We used a content analysis approach and identified the main themes using an inductive process., Key Results: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity., Conclusions: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement., Trial Registration: Clinicaltrials.gov NCT02722382., (© 2021. The Author(s).)

Rationale & Objective: With a growing number of medications and therapies available to treat chronic kidney disease (CKD), risk-versus-benefit discussions are increasingly critical. Balancing risks and benefits requires assessing patients' understanding of these, as well as incorporating patient preferences and tolerance for side effects into shared decision making., Study Design: A 26-question online survey was sent to people in the National Kidney Foundation patient email list and posted on associated social media pages to assess the respondents' willingness and comfort with taking preventative medications during earlier-stage CKD to inform a December 2020 scientific workshop co-sponsored by the National Kidney Foundation and the US Food and Drug Administration on clinical trial considerations in developing treatments for individuals with early stages of CKD., Setting & Population: Online survey of CKD patients, including broad demographic data and responses to risk-benefit scenarios, with surveys emailed to 20,249 people not identified as currently receiving kidney replacement therapy., Analytical Approach: Survey results are presented as descriptive data., Results: Of 1,029 respondents, 45 self-identified as at risk for CKD, 566 had CKD, 267 had received kidney transplants, 51 were receiving dialysis, and 100 replied other or did not answer. Respondents reported being willing to assume some risk with the goal of preventing the progression of CKD, with a greater willingness to assume risk and treatment burdens the closer they came to late-stage disease. Clinician recommendations regarding kidney therapies and clinician willingness to work with patients to address any side effects were important in respondents' willingness to initiate and persevere with a new medication., Limitations: Approximately 10% response rate with limited data on respondents., Conclusions: Risk-versus-benefit discussions appear key to patients and their care partners making well-informed decisions about taking a new medication that may or may not help the progression of their kidney disease. Future tools and strategies are needed to facilitate informed discussions of treatment in early-stage kidney disease., (© 2022 The Authors.)

Rationale & Objective: Education programs are needed for people with advanced chronic kidney disease to understand kidney failure treatment options and participate in shared decision-making (SDM). Little is known about the content and accessibility of current education programs or whether they support SDM., Study Design: Stakeholder-engaged, mixed-methods design incorporating qualitative observations and interviews, and a quantitative content analysis of slide presentations., Setting & Participants: Four sites located in Boston, Chicago, Portland (Maine), and San Diego., Analytical Approach: Thematic analysis based on the Ottawa Framework (observations and interviews) and descriptive statistical analysis (slide presentations)., Results: Data were collected from observations of 9 education sessions, 5 semistructured interviews with educators, and 133 educational slide presentations. Sites offered group classes or one-on-one sessions. Development, quality, and accuracy of educational materials varied widely. Educators emphasized dialysis (often in-center hemodialysis), with little mention of conservative management. Educators reported patients were often referred too late to education sessions and that some patients become overwhelmed if they learn of the implications of kidney failure in a group setting. Commonly, sessions were general and did not provide opportunities for tailored information most supportive of SDM. Few nephrologists were involved in education sessions or aware of the educational content. Content gaps included prognosis, decision support, mental health and cognition, advance care planning, cost, and diet. Slide presentations used did not consistently reflect best practices related to health literacy., Limitations: Findings may not be broadly generalizable., Conclusions: Education sessions focused on kidney failure treatment options do not consistently follow best practices related to health literacy or for supporting SDM. To facilitate SDM, the establishment of expectations for kidney failure treatment options should be clearly defined and integrated into the clinical workflow. Addressing content gaps, health literacy, and communication with nephrologists is necessary to improve patient education in the setting of advanced chronic kidney disease., (Copyright © 2021 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

In a groundbreaking meeting, leading global kidney disease organizations came together in the fall of 2020 as an International Home Dialysis Roundtable (IHDR) to address strategies to increase access to and uptake of home dialysis, both peritoneal dialysis and home hemodialysis. This challenge has become urgent in the wake of the coronavirus disease 2019 (COVID-19) pandemic, during which patients with advanced kidney disease, who are more susceptible to viral infections and severe complications, must be able to safely physically distance at home. To boost access to home dialysis on a global scale, IHDR members committed to collaborate, through the COVID-19 public health emergency and beyond, to promote uptake of home dialysis on a broad scale. Their commitments included increasing the reach and influence of key stakeholders with policy makers, building a cooperative of advocates and champions for home dialysis, working together to increase patient engagement and empowerment, and sharing intelligence about policy, education, and other programs so that such efforts can be operationalized globally. In the spirit of international cooperation, IHDR members agreed to document, amplify, and replicate established efforts shown to improve access to home dialysis and support new policies that facilitate access through procedures, innovation, and reimbursement., (© 2021 The Authors.)