A multidisciplinary research team has co-developed and evaluated a comprehensive educational toolkit designed to help patients with end-stage kidney disease navigate complex treatment and vascular access decisions alongside their clinicians and families. In an evaluative survey incorporating the validated Patient Education Materials Assessment Tool, the resulting resource achieved high levels of acceptability across clinical and lay stakeholder groups, with individual item agreement rates reaching 90 percent or higher across all written content areas and 89 percent or higher across video modules. The findings demonstrate that translating longitudinal clinical practice guidelines into structured, plain-language decision aids can yield educational instruments that address longstanding informational barriers in chronic renal care.
End-stage kidney disease represents an advanced stage of chronic renal failure requiring lifelong kidney replacement therapy, placing considerable cognitive and emotional demands on individuals who must evaluate disparate treatment options under high-stakes conditions. In the United States, an estimated 36 million individuals live with chronic kidney disease and roughly 800,000 have end-stage kidney disease. For these patients, managing the condition requires choosing among distinct therapeutic modalities, including hemodialysis, peritoneal dialysis, and kidney transplantation. Individuals who select hemodialysis face an additional cascade of technical choices regarding vascular access, specifically choosing between arteriovenous fistulas, arteriovenous grafts, and central venous catheters, each of which carries unique implications for infection risk, surgical reintervention, hospitalization, and overall survival.
Clinical approaches to vascular access previously centered on national standardization initiatives, such as the Fistula-First initiative established in 2003 under the sponsorship of the Centers for Medicare and Medicaid Services. That initiative prioritized arteriovenous fistulas over prosthetic grafts based on observational data demonstrating favorable long-term patency and lower infection profiles. Subsequent clinical evidence, however, documented substantial rates of fistula failure and maturation arrest, especially among older adults, women, and individuals presenting with diabetes or compromised vasculature. To address the limitations of standardized population-level metrics, the 2019 Kidney Disease Outcomes Quality Initiative Clinical Practice Guideline for Vascular Access shifted toward an individualized strategy termed the End-Stage Kidney Disease Life Plan, which maps out a continuous sequence of dialysis modalities and vascular access sites tailored to a patient’s personal trajectory.
Despite widespread professional endorsement of the Life Plan framework, clinical uptake has encountered persistent operational friction across healthcare settings. Prior foundational research grounded in the Consolidated Framework for Implementation Research identified significant obstacles, including compressed clinical consultation times, fragmented electronic health record systems, and an absence of validated communication aids capable of facilitating shared decision-making. Patients frequently reported experiencing substantial emotional distress and confusion when confronting complex medical jargon following diagnosis, leaving many to turn to unverified internet searches and informal peer support networks to decipher treatment options. Clinicians simultaneously faced logistical difficulties in coordinating across primary care physicians, nephrologists, interventional radiologists, and vascular surgeons during routine care.
To bridge these communicative and structural gaps, investigators at the University of California, Los Angeles initiated an iterative co-design process aimed at addressing the materials and equipment domain of implementation research. The development team partnered directly with patients, their supportive others—including family members, caregivers, and designated community support networks—and healthcare providers to construct the End-Stage Kidney Disease Life Plan Implementation Toolkit. Content formulation was derived from qualitative interviews involving 34 foundational participants, encompassing 11 patients, two supportive others, and 21 clinicians. This collaborative process ensured that the resulting materials mirrored the genuine health literacy needs, priorities, and lived experiences of individuals navigating advanced kidney care.
The completed toolkit spans five discrete functional sections accompanied by supplementary educational media. Part One integrates the Patient Priorities Care My Health Priorities framework, offering guided prompts in digital and paper formats to help individuals identify focal health goals and personal values before clinical appointments. Part Two, forming the largest core of the toolkit, provides accessible disease education on renal anatomy, disease progression, transplant considerations, dialysis modalities, and access complications. Part Three incorporates the Best Case/Worst Case communication tool, a paper-and-pen visual aid originating from surgical decision-making that assists clinicians in outlining anticipated outcomes, best-case scenarios, and worst-case complications as understandable narratives. Part Four expands the traditional care team roster to document dialysis facility staff, specialty coordinators, and non-clinical caregivers, while Part Five outlines the concrete components needed to formalize the longitudinal Life Plan.
To evaluate usability, comprehension, and stakeholder satisfaction, investigators administered an anonymous 52-item cross-sectional survey built upon the Patient Education Materials Assessment Tool. The survey measured two core domains: understandability, evaluating layout, language, and graphic presentation, and actionability, measuring the clarity of recommended behavioral steps. Of the 128 individuals who initiated the survey, 63 completed at least 50 percent of the questions and were included in the primary analysis. This analytical cohort comprised 25 patients, 17 supportive others, 12 clinicians, and nine respondents who did not specify their clinical role. Free-text commentary was concurrently collected and analyzed using qualitative content analysis to isolate actionable refinements.
The quantitative results showed broad stakeholder consensus regarding the clarity and utility of the developed materials. Across all 52 assessment items evaluating the written content, agreement rates ranged between 90.5 percent and 100 percent, with understandability metrics achieving complete consensus among several subcategories. For example, 100 percent of supportive others agreed that the written text presented information in a logical sequence, and 100 percent of patients agreed that the materials effectively divided complex medical information into manageable chunks. The video modules, which feature four diverse patient narratives alongside dedicated explainers of the Life Plan and decision frameworks, similarly achieved between 89.7 percent and 100 percent positive agreement across all evaluative items.
Specific areas of divergence in the survey data helped clarify remaining challenges in communicating complex chronic illness concepts. The highest level of disagreement regarding written materials appeared on the item evaluating whether materials avoid requiring mathematical calculations, where 9.5 percent of respondents disagreed, an observation observed entirely among patients and supportive others. Additionally, 16.7 percent of clinicians expressed concern that visual elements might distract from primary content rather than reinforce it. In the video assessments, 10.3 percent of participants disagreed that technical medical terms were sufficiently defined, with disagreement concentrated among lay participants, highlighting the persistent difficulty of eliminating technical jargon without sacrificing clinical precision.
Qualitative feedback collected from free-text survey responses yielded practical directions for revision. While patients praised the comprehensive scope of the manual and supportive others noted its structured presentation, several participants requested an alternative to explicit clinical photographs depicting dialysis catheters, vessel aneurysms, and tissue necrosis. In response, investigators created an alternative illustrated edition, adding advisory warnings and direct links within the original document. Researchers also conducted targeted readability revisions using the Flesch-Kincaid formula, lowering the reading grade level from an initial score of 7.1 to 6.5 through simplified syntax and direct vocabulary, while expanding plain-language definitions throughout the narrative glossary.
The investigators noted several methodological limitations that contextualize the survey findings. The toolkit was developed and evaluated exclusively in English, which restricts its immediate generalizability among non-English-speaking populations known to experience substantial kidney health disparities. Furthermore, participants who voluntarily completed the survey may represent a subset of patients and caregivers with higher baseline health literacy and motivation than the broader end-stage kidney disease population. The research team also highlighted that the assessment measured self-reported acceptability and perceived understandability rather than prospective clinical outcomes or longitudinal treatment retention.
Future research will focus on examining the toolkit within routine nephrology and vascular surgery practices to determine its influence on clinical decision quality, dialysis access patency, and patient psychological well-being. By integrating structured values elicitation, multimodal storytelling, and longitudinal care roadmaps into an openly accessible resource, the project establishes a practical template for turning complex vascular access guidelines into collaborative bedside practice.
Subject of Research: Evaluation of an implementation toolkit for end-stage kidney disease life planning
Article Title: Development and Preliminary Evaluation of a Toolkit Aimed at Improving Implementation of the End-Stage Kidney Disease Life Plan
Article References: Mavilian, C., Guevara-Plunkett, S., Altom, K., Horiuchi, K. M., Woo, K., & Keller, M. S. (2026). Development and Preliminary Evaluation of a Toolkit Aimed at Improving Implementation of the End-Stage Kidney Disease Life Plan. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-026-10963-w
Image Credits: AI Generated
DOI: 10.1007/s11606-026-10963-w
Keywords: end-stage kidney disease, kidney replacement therapy, vascular access, shared decision-making, patient education, clinical practice guidelines, nephrology, implementation research, Development, Preliminary, Evaluation, Toolkit
