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Hemodialysis vascular access is the “lifeline” for patients on hemodialysis. Unfortunately, because of its poor patency and significant complication rate, it is also the “Achilles heel” of hemodialysis. For example, the current unassisted arteriovenous fistula (AVF) maturation rate is only

New technologies challenge current dialysis treatment paradigms as devices become smaller, more portable, and increasingly used outside of the dialysis clinic. It is unclear how patients will view this care transition, and it will be important to consider patient and care partner perspectives during all aspects of development for novel dialysis therapies, from design and clinical trials to regulatory approval. To gain insight into this area, the Kidney Health Initiative (KHI)—a public-private partnership between the American Society of Nephrology, the US Food and Drug Administration, and nearly 80 member organizations and companies dedicated to enhancing patient safety and fostering innovation in kidney disease—convened a workshop of patients, care partners, and other kidney community stakeholders. The workshop included background presentations followed by focused small-group discussions in three areas (device design, clinical trials, and regulatory approval). Participants explored how to involve patients throughout the lifecycle of a medical device, including discussions of how patients can influence device design, assist in the planning and implementation of clinical trials, and provide input to impact regulatory decisions. Patients were engaged in the workshop discussion and interested in sharing their perspectives, but they recommended additional efforts around education, communication, and outreach in these areas.

BACKGROUND Health advocacy groups provide education, raise public awareness, and engage in legislative, scientific, and regulatory processes to advance funding and treatments for many diseases. Despite a high burden of chronic kidney disease (CKD) in the United States, public awareness and research funding lag behind those for other disease states. We undertook this study of patients receiving maintenance dialysis to describe knowledge and beliefs about CKD advocacy, understand perceptions regarding advocacy participation, and elicit ideas for generating more advocacy in the dialysis community. STUDY DESIGN Qualitative study. SETTING & PARTICIPANTS 48 patients (89% response rate) receiving in-center hemodialysis (n=39), home hemodialysis (n=4), and peritoneal dialysis (n=5) from 14 US states. METHODOLOGY Semistructured interviews. ANALYTICAL APPROACH Transcripts were thematically analyzed. RESULTS 5 themes describing patient perspectives on CKD advocacy were identified: (1) advocacy awareness (advocacy vs engagement knowledge, concrete knowledge, CKD publicity), (2) willingness to participate (personal qualities, internal efficacy, external efficacy), (3) motivations (altruism, providing a purpose, advancement of personal health, self-education), (4) resource availability (time, financial and transportation, health status), and (5) mobilization experience (key figure, mobilization network). Participants displayed operational understanding of advocacy but generally lacked knowledge about specific opportunities for participation. Personal qualities and external efficacy were perceived as important for advocacy participation, as were motivating factors such as altruism and self-education. Resources factored heavily into perceived participation ability. Most participants identified a key figure who invited them to participate in advocacy. In-person patient-delivered communication about advocacy opportunities was identified as critical to enhancing CKD advocacy among patients living on dialysis therapy. LIMITATIONS Potential selection bias and inclusion of only English-speaking participants may limit generalizability. CONCLUSIONS Overall, our results suggest that there may be untapped advocacy potential within the dialysis community and highlight the need for local in-person patient-led initiatives to increase patient involvement in CKD advocacy.

Background Little is known about factors that are important to patients with advanced kidney disease and their perspectives at the time they choose a dialysis modality. EPOCH-RRT, a study supported in part by the Patient-Centered Outcomes Research Institute (PCORI), was designed to assist patients with this choice by identifying such factors and effectively provide relevant information. Study Design Cross-sectional study, designed and conducted in collaboration with a multistakeholder advisory panel that included patients, caregivers, and health care professionals. Setting & Participants 180 patients with advanced chronic kidney disease (CKD; estimated glomerular filtration rate Methodology Semistructured telephone interviews including open- and closed-ended questions. Analytical Approach Mixed methods, integrating quantitative and qualitative approaches; themes identified through content analysis of interview transcripts by 2 independent coders. Results Themes most often reported as important were keeping as much independence as possible, quality and quantity of life, and flexibility in daily schedule. Other factors (eg, concern about the way they look) differed across patient subgroups based on age, sex, and NDD-CKD/dialysis modality. Among patients who had initiated dialysis therapy, almost half (47%) the HD patients believed that the decision to be treated by HD had largely not been their choice; this was only reported by 3% of peritoneal dialysis patients. Limitations Recruitment through social media and willingness to participate in lengthy telephone interviews resulted in a select sample that may not be representative of the broader advanced CKD population; therefore, generalizability of findings cannot be determined. Conclusions Incorporation of patient priorities in care improves health outcomes. Given the perceived limited role in the choice of dialysis treatment, our findings support the need for interventions to improve shared decision making on dialysis treatment options, targeting both patients and clinicians.

Innovation in kidney diseases is not commensurate with the effect of these diseases on human health and mortality or innovation in other key therapeutic areas. A primary cause of the dearth in innovation is that kidney diseases disproportionately affect a demographic that is largely disenfranchised, lacking sufficient advocacy, public attention, and funding. A secondary and likely consequent cause is that the existing infrastructure supporting nephrology research pales in comparison with those for other internal medicine specialties, especially cardiology and oncology. Citing such inequities, however, is not enough. Changing the status quo will require a coordinated effort to identify and redress the existing deficits. Specifically, these deficits relate to the need to further develop and improve the following: understanding of the disease mechanisms and pathophysiology, patient engagement and activism, clinical trial infrastructure, and investigational clinical trial designs as well as coordinated efforts among critical stakeholders. This paper identifies potential solutions to these barriers, some of which are already underway through the Kidney Health Initiative. The Kidney Health Initiative is unique and will serve as a current and future platform from which to overcome these barriers to innovation in nephrology.