Education programs are needed for people with advanced chronic kidney disease (CKD) to understand kidney failure treatment options and participate in shared decision-making (SDM). Little is known about the content and accessibility of current education programs, and whether they support SDM.
Stakeholder-engaged, mixed-methods design incorporating qualitative observations and interviews, and a quantitative content analysis of slide presentations.
4 sites in Boston, Chicago, Portland (Maine), and San Diego.
Thematic analysis based on the Ottawa Framework (observations and interviews) and descriptive statistical analysis (slide presentations).
Data were collected from observations of 9 education sessions, 5 semi-structured interviews with educators, and 133 educational slide presentations. Sites offered group classes or one-on-one sessions. Development, quality, and accuracy of educational materials varied widely. Educators emphasized dialysis (often in-center hemodialysis), with little mention of conservative management. Educators reported patients were often referred too late to education sessions and that some patients become overwhelmed if they learn of the implications of kidney failure in a group setting. Commonly, sessions were general and did not provide opportunities for tailored information most supportive of SDM. Few nephrologists were involved in education sessions or aware of the educational content. Content gaps included prognosis, decision support, mental health and cognition, advanced care planning, cost, and diet. Slide presentations used did not consistently reflect best practices related to health literacy.
Findings may not be broadly generalizable.
Education sessions focused on kidney failure options do not consistently follow best practices related to health literacy or for supporting shared decision-making. To facilitate SDM, establishing expectations for kidney failure treatment options should be clearly defined and integrated into the clinical workflow. Addressing content gaps, health literacy, and communication with nephrologists are necessary steps for improving patient education in the setting of advanced CKD.

Copyright © 2021. Published by Elsevier Inc.

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