Abstract
Rationale & Objective: Education programs are needed for people with advanced chronic kidney disease 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 or whether they support SDM. Study Design: Stakeholder-engaged, mixed-methods design incorporating qualitative observations and interviews, and a quantitative content analysis of slide presentations. Setting & Participants: Four sites located in Boston, Chicago, Portland (Maine), and San Diego. Analytical Approach: Thematic analysis based on the Ottawa Framework (observations and interviews) and descriptive statistical analysis (slide presentations). Results: Data were collected from observations of 9 education sessions, 5 semistructured 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, advance care planning, cost, and diet. Slide presentations used did not consistently reflect best practices related to health literacy. Limitations: Findings may not be broadly generalizable. Conclusions: Education sessions focused on kidney failure treatment options do not consistently follow best practices related to health literacy or for supporting SDM. To facilitate SDM, the establishment of 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 is necessary to improve patient education in the setting of advanced chronic kidney disease.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 690-699 |
| Number of pages | 10 |
| Journal | American Journal of Kidney Diseases |
| Volume | 78 |
| Issue number | 5 |
| DOIs | |
| State | Published - Nov 2021 |
Funding
Research reported in this publication was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CDR-2017C1-6297). PCORI, its Board of Governors, or its Methodology Committee had no role in defining the content of this article. Susan Koch-Weser, ScD, Thalia Porteny, PhD, MSc, Dena E. Rifkin, MD, MSc, Tamara Isakova, MD, MMSc, Elisa J. Gordon, PhD, MPH, Ana Rossi, MD, MPH, Geri Lynn Baumblatt, MA, Jennifer St. Clair Russell, PhD, MSEd, Kelli Collins Damron, MSW, Shennon Wofford, RN, Arushi Agarwal, BS, Daniel E. Weiner, MD, MS, and Keren Ladin, PhD, MSc. Designed and oversaw the study: KL, SK-W; performed analyses and developed conclusions: all authors; obtained funding: KL, DEW. Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual's own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate. Research reported in this publication was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CDR-2017C1-6297). PCORI, its Board of Governors, or its Methodology Committee had no role in defining the content of this article. The authors declare that they have no relevant financial interests. The views presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee. Received September 10, 2020. Evaluated by 2 external peer reviewers and a methods reviewer, with editorial input from an Acting Editor-in-Chief (Editorial Board Member Neil R. Powe, MD, MPH, MBA). Accepted in revised form February 12, 2021. The involvement of an Acting Editor-in-Chief to handle the peer-review and decision-making processes was to comply with AJKD's procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies.
Keywords
- Kidney
- aging
- care planning
- chronic kidney disease (CKD)
- conservative care
- decisional support
- direct observation
- health literacy
- interviews
- knowledge gap
- patient education
- patient-centered
- qualitative
- reading level
- renal replacement therapy (RRT)
- shared decision-making
ASJC Scopus subject areas
- Nephrology
