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The number and percentage of patients dialyzing at home has steadily increased during the past decade, and federal policy initiatives have driven interest to a new high. However, the mere utilization of home dialysis does not ensure better outcomes for patients and care partners. Although public reporting systems for dialysis quality are mature and robust, the incorporation of home dialysis quality in those systems is immature; the advent of the End-Stage Renal Disease Treatment Choices payment model brings this problem into sharp relief. The home dialysis modalities present both common and unique targets for quality measurement. For both modalities, therapy duration (or its inverse, technique failure) is a potential target. For peritoneal dialysis, peritonitis, catheter complications, and residual kidney function are additional targets; for home hemodialysis, vascular access infections, dialysis adequacy, and treatment adherence are targets. Patient-reported experience measures are also important; this domain is a long-standing disparity, as in-facility hemodialysis patients have been routinely surveyed for several years. The statistical aspect of quality measurement in home dialysis requires some adaptation, as the typical home dialysis program is small, thus presenting a threat to reliability; pooling programs may be necessary. Ultimately, promoting high-quality home dialysis will likely increase utilization of home dialysis.

Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout – defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD – is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers. Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically. Results: We identified two themes. Suffering an unrelenting responsibility contributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilience against burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities. Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

Background Dialysis care often focuses on outcomes that are of lesser importance to patients than to clinicians. There is growing international interest in individualizing care based on patient priorities, but evidence-based approaches are lacking. The objective of this study was to develop a person-centered dialysis care planning program. To achieve this objective we performed qualitative interviews, responsively developed a novel care planning program and then assessed program content and burden. Methods We conducted 25 concept elicitation interviews with US hemodialysis patients, care partners and care providers, using thematic analysis to analyze transcripts. Interview findings and interdisciplinary stakeholder panel input informed the development of a new care planning program, My Dialysis Plan. We then conducted 19 cognitive debriefing interviews with patients, care partners and care providers to assess the program’s content and face validities, comprehensibility and burden. Results We identified five themes in concept elicitation interviews: feeling boxed in by the system, navigating dual lives, acknowledging an evolving identity, respecting the individual as a whole person and increasing individualization to enhance care. We then developed a person-centered care planning program and supporting materials that underwent 32 stakeholder-informed iterations. Data from subsequent cognitive interviews led to program revisions intended to improve contextualization and understanding, decrease burden and facilitate implementation. Conclusions My Dialysis Plan is a content-valid, person-centered dialysis care planning program that aims to promote care individualization. Investigation of the program’s capacity to improve patient experiences and outcomes is needed.

The National Kidney Foundation (NKF) launched the first national U.S. kidney disease patient registry, the NKF Patient Network, opened to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education, and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December 2020.Longitudinal observational cohort study of patient-entered data with or without electronic healthcare records (EHR) linkage in collaboration with health systems.People with CKD, age ≥18 years, are invited through their provider, NKF communications, or national outreach campaign. People self-enroll and share their data through a secure portal that offers individualized education and support. The first health system partner is Geisinger.Any cause and stage of CKD, including dialysis and kidney transplant recipients.Feasibility of the EHR data transfer, participants characteristics, and their perspectives on usability and content.Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthieDuring the feasibility study, 80 participants completed their profile and 42 completed a satisfaction survey. Mean age was 57.5 years, 51.3% were women, 83% were White, and 89% were non-Hispanic or Latino. 60% of the participants were not aware of their level of estimated glomerular filtration rate (eGFR) and 91% of their urinary albumin/creatinine ratio (UACR).Challenges for the Network are lack of awareness of kidney disease for many with CKD, difficulty in recruiting vulnerable populations or those with low digital readiness, and loss to follow-up, all leading to selection bias.The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments.

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.

Background. Cardiovascular disease is a major cause of morbidity and mortality in kidney transplant recipients. Trial evidence to improve cardiovascular outcomes is limited by inconsistent reporting of outcomes, which may also lack patient-relevance. This study aimed to assess the range and consistency of cardiovascular outcomes reported by contemporary trials in kidney transplant recipients. Methods. A systematic review of all randomized controlled trials involving adult kidney transplant recipients that reported at least 1 cardiovascular outcome from January 2012 to December 2019 was performed, including Embase, MEDLINE, Cochrane, and ClinicalTrials.gov electronic databases. Trial characteristics were extracted and all levels of specification of the cardiovascular outcome measures reported were analyzed (the measure definition, metric‚ and method of aggregation). Measures assessing a similar aspect of cardiovascular disease were categorized into outcomes. Results. From 93 eligible trials involving 27 609 participants, 490 outcome measures were identified. The outcome measures were grouped into 38 outcomes. A cardiovascular composite was the most common outcome reported (40 trials, 43%) followed by cardiovascular mortality (42%) and acute coronary syndrome (31%). Cardiovascular composite was also the most heterogeneous outcome with 77 measures reported followed by cardiovascular mortality (n = 58) and inflammatory biomarkers (n = 51). The most common cardiovascular composite outcome components reported were major cardiovascular events (18 trials), stroke unspecified (11 trials), and myocardial infarction unspecified (10 trials). Conclusions. There is substantial heterogeneity in cardiovascular outcome reporting in kidney transplant trials.

Background Individuals on hemodialysis bear substantial symptom burdens, but providers often underappreciate patient symptoms. In general, standardized, patient-reported symptom data are not captured during routine dialysis care. We undertook this study to better understand patient experiences with symptoms and symptom reporting. In exploratory interviews, we sought to describe hemodialysis nurse and patient care technician perspectives on symptoms and symptom reporting. Methods We conducted semi-structured interviews with 42 US hemodialysis patients and 13 hemodialysis clinic personnel. Interviews were conducted between February and October 2017 and were analyzed using thematic analysis. Results Seven themes were identified in patient interviews: (i) symptoms engendering symptoms, (ii) resignation that life is dependent on a machine, (iii) experiencing the life intrusiveness of dialysis, (iv) developing adaptive coping strategies, (v) creating a personal symptom narrative, (vi) negotiating loss of control and (vii) encountering the limits of the dialysis delivery system. Overall, patient symptom experiences and perceptions appeared to influence symptom-reporting tendencies, leading some patients to communicate proactively about symptoms, but others to endure silently all but the most severe symptoms. Three themes were identified in exploratory clinic personnel interviews: (i) searching for symptom explanations, (ii) facing the limits of their roles and (iii) encountering the limits of the dialysis delivery system. In contrast to patients, clinic personnel generally believed that most patients were inclined to spontaneously report their symptoms to providers. Conclusions Interviews with patients and dialysis clinic personnel suggest that symptom reporting is highly variable and likely influenced by many personal, treatment and environmental factors.

Rationale & Objective Despite growing interest in individualizing care, routine dialysis processes, including the interdisciplinary plan of care, often fail to account for patient-identified priorities. To better align dialysis care with patient priorities and improve care planning experiences, we implemented a person-centered care plan program at a single clinic. We also sought to gain insight into key implementation considerations and areas for program improvement. Study Design 6-month quality improvement project with research substudy. Setting & Participants 49 hemodialysis patients and 14 care team members at a North Carolina dialysis clinic. Quality Improvement Activities Implementation of My Dialysis Plan, a person-centered care plan program. Outcome(s) Participant perspectives and care plan meeting characteristics (quality improvement); pre- to postprogram change in patient-reported autonomy support, patient-centeredness of care, and dialysis care individualization (research). Analytical Approach We used the Consolidated Framework for Implementation Research to guide implementation and evaluation. We conducted pre-, intra-, and post-project interviews with clinic stakeholders (patients, clinic personnel, and medical providers) to identify implementation barriers, facilitators, and perceptions. We compared pre- and post-project care plan meeting content and patient-reported outcome survey scores. Results We conducted 54 care plans with 49 patients. Overall, care teams successfully used My Dialysis Plan to elicit and link patient priorities to actionable aspects of dialysis care. Participants identified interdisciplinary team commitment, accountability, and the structured yet flexible meeting approach as key implementation elements. Throughout the project, stakeholder input guided program modifications (eg, implementation practices and resources) to better meet clinic needs, but follow-up on care plan–identified action items remained challenging. Among the 28 substudy participants, there was no difference in pre- to post-project patient-reported outcome survey scores. Limitations Single clinic implementation. Conclusions My Dialysis Plan has the potential to enhance dialysis care individualization and care plan experiences. Evaluation of program impact on patient-reported and clinical outcomes is needed., Graphical abstract