ABSTRACT
OBJECTIVE: The updated 2019 National Kidney Foundation Kidney Disease Outcomes Quality Initiative vascular access guidelines recommend patient-centered, multi-disciplinary construction and regular update of an individualized end-stage kidney disease (ESKD) Life-Plan (LP) for each patient, a dramatic shift from previous recommendations and policy. The objective of this study was to examine barriers and facilitators to implementing the LP among key stakeholders. METHODS: Semi-structured individual interviews were analyzed using inductive and deductive coding. Codes were mapped to relevant domains in the Consolidated Framework for Implementation Research (CFIR). RESULTS: We interviewed 34 participants: 11 patients with end-stage kidney disease, 2 care partners, and 21 clinicians who care for patients with end-stage kidney disease. In both the clinician and the patient/care partner categories, saturation (where no new themes were identified) was reached at 8 participants. We identified significant barriers and facilitators to implementation of the ESKD LP across three CFIR domains: Innovation, Outer setting, and Inner setting. Regarding the Innovation domain, patients and care partners valued the concept of shared decision-making with their care team (CFIR construct: innovation design). However, both clinicians and patients had significant concerns about the complexity of decision-making around kidney substitutes and the ability of patients to digest the overwhelming amount of information needed to effectively participate in creating the LP (innovation complexity). Clinicians expressed concerns regarding the lack of existing evidence base which limits their ability to effectively counsel patients (innovation evidence base) and the implementation costs (innovation cost). Within the Outer Setting, both clinicians and patients were concerned about performance measurement pressure under the existing "Fistula First" policies and had concerns about reimbursement (financing). In the Inner Setting, clinicians and patients stressed the lack of available resources and access to knowledge and information. CONCLUSION: Given the complexity of decision-making around kidney substitutes and vascular access, our findings point to the need for implementation strategies, infrastructure development, and policy change to facilitate ESKD LP development.
