Development and Preliminary Evaluation of a Toolkit Aimed at Improving Implementation of the End-Stage Kidney Disease Life Plan

Background End-stage kidney disease (ESKD) requires lifelong kidney replacement therapy (KRT), including complex decisions about treatment modality and vascular access. The 2019 Kidney Disease Outcomes Quality Initiative (KDOQI) Clinical Practice Guideline for Vascular Access prioritizes the ESKD Life Plan, a patient-centered collaborative, multidisciplinary framework. Implementation has been limited by clinician time constraints, fragmented care coordination, and patients’ difficulty navigating complex decisions without adequate education. Objective To describe the iterative co-development and preliminary evaluation of the ESKD Life Plan Implementation Toolkit, designed to facilitate shared decision-making around KRT modality and vascular access selection in alignment with current KDOQI guidelines. Design Toolkit content was based on prior qualitative research with ESKD patients, supportive others, and clinicians. The toolkit spans five domains: care team identification, patient goals and values, KRT education, treatment selection, and Life Plan completion. Participants ESKD patients, supportive others, and clinicians aged ≥ 18. Main Measures Following iterative refinement with community co-creators, a cross-sectional survey incorporating the Patient Education Materials Assessment Tool (PEMAT) was administered. Key Results Of 128 survey participants, 63 (49.2%) completed ≥ 50% of items, including 25 patients (46.3%), 17 supportive others (31.5%), and 12 clinicians (22.2%). PEMAT ratings were highly favorable across all domains, with ≥ 89% agreement on written materials and videos. Feedback suggested simplifying medical terminology, refining visual hierarchy, and offering an alternative to graphic clinical photographs. Conclusions The toolkit demonstrated strong acceptability among nephrology patients, supportive others, and clinicians. By integrating disease education with structured values elicitation and a Best Case/Worst Case decision framework, the toolkit operationalizes the patient-centered approach central to KDOQI guidelines. Clinical Trial Registration Number NA.