A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network.

RATIONALE & OBJECTIVE: The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open 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. STUDY DESIGN: Longitudinal observational cohort study of patient-entered data with or without electronic health care record (EHR) linkage in collaboration with health systems. SETTING & PARTICIPANTS: 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. EXPOSURE: Any cause and stage of CKD, including dialysis and kidney transplant recipients. OUTCOME: Feasibility of the EHR data transfer, participants' characteristics, and their perspectives on usability and content. ANALYTICAL APPROACH: Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthie 2.0 platform. RESULTS: During the feasibility study, 80 participants completed their profile, and 42 completed a satisfaction survey. Mean age was 57.5 years, 51% were women, 83% were White, and 89% were non-Hispanic or Latino. Of the participants, 60% were not aware of their level of estimated glomerular filtration rate and 91% of their urinary albumin-creatinine ratio. LIMITATIONS: 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. CONCLUSIONS: 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.

A Systematic Approach To Promoting Home Hemodialysis during End Stage Kidney Disease.

Home dialysis has garnered much attention since the advent of the Advancing American Kidney Health initiative. For many patients and nephrologists, home dialysis and peritoneal dialysis are synonymous. However, home hemodialysis (HHD) should not be forgotten. Since 2004, HHD has grown more rapidly than other dialytic modalities. The cardinal feature of HHD is customizability of treatment intensity, which can be titrated to address the vexing problems of volume and pressure loading during interdialytic gaps and ultrafiltration intensity during each hemodialysis session. Growing HHD utilization requires commitment to introducing patients to the modality throughout the course of ESKD. In this article, we describe a set of strategies for introducing HHD concepts and equipment. First, patients initiating dialysis may attend a transitional care unit, which offers an educational program about all dialytic modalities during 3-5 weeks of in-facility hemodialysis, possibly using HHD equipment. Second, prevalent patients on hemodialysis may participate in "trial-run" programs, which allow patients to experience increased treatment frequency and HHD equipment for several weeks, but without the overt commitment of initiating HHD training. In both models, perceived barriers to HHD-including fear of equipment, anxiety about self-cannulation, catheter dependence, and the absence of a care partner-can be addressed in a supportive setting. Third, patients on peritoneal dialysis who are nearing a transition to hemodialysis may be encouraged to consider a home-to-home transition (i.e., from peritoneal dialysis to HHD). Taken together, these strategies represent a systematic approach to growing HHD utilization in multiple phenotypes of patients on dialysis. With the feature of facilitating intensive hemodialysis, HHD can be a key not only to satiating demand for home dialysis, but also to improving the health of patients on dialysis.

Time savings of weekly versus three-times-per-week administration of erythropoiesis stimulating agents in United States dialysis patients.

OBJECTIVE: Previous research suggests that erythropoiesis stimulating agent (ESA) administration in dialysis is a time-consuming task and switching to less frequently dosed ESAs may offer operational efficiencies. Our objective was to describe and measure the time spent on tasks in the ESA administration process in US dialysis centers, and to estimate potential efficiency gains of using weekly (QW) administration vs three-times-per-week (TIW) administration. METHODS: We conducted a time and motion study of staff time required to prepare, administer and document ESA doses. Dialysis centers using intravenous administration of TIW epoetin alfa (EPO) or QW darbepoetin alfa (DPO) were selected in pairs (one EPO, one DPO) from the same organization to help control for differences in ESA protocols and staffing patterns across organizations. ESA-related tasks were timed by trained observers. Time savings of TIW vs QW administration were estimated. Staff were interviewed about alternate activities that could be accomplished if time were saved in the ESA process. RESULTS: A total of 200 administrations were observed (81 DPO, 119 EPO). A mean of 2.26 (95% CI: 2.1-2.5) minutes per dose were required for ESA administration. ESA process time per administration did not vary significantly between EPO and DPO (p = 0.83). Estimated potential monthly staff time savings for an average facility of 70 patients totaled 23 hours, due to fewer ESA administrations using QW DPO. Patient education and fulfillment of care plans were identified as opportunities for improved care processes that could be implemented if staff time was freed up from the ESA process. LIMITATIONS: Results should not be generalized to other countries, ESAs and/or dosing frequencies. CONCLUSIONS: Switching from TIW EPO to QW DPO can result in time savings due to fewer administrations and provide opportunities to redirect nurse time towards activities aimed at improving patient care.

Survey of home hemodialysis patients and nursing staff regarding vascular access use and care.

Vascular access infections are of concern to hemodialysis patients and nurses. Best demonstrated practices (BDPs) have not been developed for home hemodialysis (HHD) access use, but there have been generally accepted practices (GAPs) endorsed by dialysis professionals. We developed a survey to gather information about training provided and actual practices of HHD patients using the NxStage System One HHD machine. We used GAP to assess training used by nurses to teach HHD access care and then assess actual practice (adherence) by HHD patients. We also assessed training and adherence where GAPs do not exist. We received a 43% response rate from patients and 76% response from nurses representing 19 randomly selected HHD training centers. We found that nurses were not uniformly instructing HHD patients according to GAP, patients were not performing access cannulation according to GAP, nor were they adherent to their training procedures. Identification of signs and symptoms of infection was commonly trained appropriately, but we observed a reluctance to report some signs and symptoms of infection by patients. Of particular concern, when aggregating all steps surveyed, not a single nurse or patient reported training or performing all steps in accordance with GAP. We also identified practices for which there are no GAPs that require further study and may or may not impact outcomes such as infection. Further research is needed to develop strategies to implement and expand GAP, measure outcomes, and ultimately develop BDP for HHD to improve infectious complications.

Altered carnitine metabolism in dialysis patients with reduced physical function may be due to dysfunctional fatty acid oxidation.

BACKGROUND: It has been reported that hemodialysis patients have elevated plasma acylcarnitine concentrations, which correlates to reduced red blood cell integrity. It has also been reported that the supplementation of L-carnitine for these patients improves anemia, glucose metabolism and muscle function, but the mechanism of these relationships remains unknown. We hypothesized that the cause of increased plasma acylcarnitines is incomplete fatty acid oxidation and the underlying disturbance of metabolism reduces muscle function, resulting in decreased ability to function and quality of life, and glucose availability, resulting in decreased red blood cell integrity and worsened anemia. METHODS: This analysis was conducted on baseline data from a clinical trial of carnitine supplementation in hemodialysis patients with reduced physical function and free carnitine levels. Partial correlations controlling for age, gender, hemoglobin and subjective global assessment score for each acylcarnitine species and outcome were computed using SPSS version 17.0 and a significance level of P < 0.05. To measure the impact of acylcarnitine acyl chain length on these relationships, the correlation coefficients were categorized by chain length and linear regressions were computed for each outcome measure. RESULTS: Linear regression analysis (n = 58) revealed significant negative relationships between chain length and Short Form-36 physical composite score, sit-to-stand count and 6-min walk distance (r(2) = 0.635, 0.332 and 0.347, respectively) and a significant positive relationship with erythropoietin dose (r(2) = 0.181). CONCLUSION: Our data revealed that longer acyl chain length significantly predicts poorer physical function and worsened anemia, and this data supports our proposed mechanism, which may lead to increased understanding of altered carnitine metabolism in hemodialysis patients.

Building the chronic kidney disease management team.

The need to be efficient and the demands for performance-based service are changing how nephrologists deliver care. Chronic kidney disease (CKD) occurs in patients with complex medical and social problems. CKD management requires that multidisciplinary professionals provide patient education, disease management, and psychosocial support. To remain cost-efficient, many physicians are training and supervising midlevel practitioners in the delivery of specialized health care. Specialized care that meets present CKD patient needs is best delivered in a CKD clinic. Three models of CKD clinic are identified: (1) anemia management CKD clinic, (2) the basic CKD clinic, and (3) the comprehensive CKD clinic. Each clinic model is based on critical elements of staffing, billable services, and patient-focused health care. Billable services are anemia-management services, physician services that may be provided by midlevel practitioners, and medical nutrition therapy. In some cases, social worker services may be billable. Building a patient-focused clinic that offers CKD management requires planning, familiarity with federal regulations and statutes, and skillful practitioners. Making services cost-efficient and outcome oriented requires careful physician leadership, talented midlevel practitioners, and billing professionals who understand the goals of the CKD clinic. As Medicare payment reforms evolve, a well-organized CKD program can be well poised to meet the requirements of payers and congressional mandates for performance-based purchasing.