Susan Koch-Weser1, Thalia Porteny2, Dena E Rifkin3, Tamara Isakova4, Elisa J Gordon5, Ana Rossi6, Geri Lynn Baumblatt7, Jennifer St Clair Russell8, Kelli Collins Damron9, Shennon Wofford9, Arushi Agarwal10, Daniel E Weiner10, Keren Ladin11. 1. Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston. 2. Department of Occupational Therapy, Tufts University, Medford, Massachusetts. 3. Division of Nephrology, Veterans Affairs Healthcare System and University of California, San Diego, San Diego, California. 4. Center for Translational Metabolism and Health, Institute for Public Health and Medicine, Chicago, Illinois. 5. Department of Surgery, Division of Transplantation, Center for Health Services and Outcomes Research, and Center for Bioethics and Medical Humanities, Chicago, Illinois. 6. Piedmont Transplant Institute, Atlanta, Georgia. 7. Northwestern University Feinberg School of Medicine; Articulations Consulting, Chicago, Illinois. 8. National Kidney Foundation, New York, NY. 9. Dialysis Clinics Inc, Spartanburg, South Carolina. 10. William B. Schwartz Division of Nephrology, Tufts Medical Center, Boston. 11. Department of Occupational Therapy, Tufts University, Medford, Massachusetts; Department of Community Health and Research on Ethics, Aging, and Community Health (REACH Lab), Tufts University, Medford, Massachusetts. Electronic address: keren.ladin@tufts.edu.
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.
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.
Authors: Stephanie W Ong; Julia V Wong; Bourne L Auguste; Alexander G Logan; Robert P Nolan; Christopher T Chan Journal: Can J Kidney Health Dis Date: 2022-06-17
Authors: Nicole DePasquale; Jamie A Green; Patti L Ephraim; Sarah Morton; Sarah B Peskoe; Clemontina A Davenport; Dinushika Mohottige; Lisa McElroy; Tara S Strigo; Felicia Hill-Briggs; Teri Browne; Jonathan Wilson; LaPricia Lewis-Boyer; Ashley N Cabacungan; L Ebony Boulware Journal: Kidney Med Date: 2022-08-04