Patient Education for Kidney Failure Treatment: A Mixed-Methods Study

Published:April 21, 2021DOI:

      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).


      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.


      Findings may not be broadly generalizable.


      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.

      Index Words

      To read this article in full you will need to make a payment


      Subscribe to American Journal of Kidney Diseases
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Plantinga L.C.
        • Pham H.H.
        • Fink N.E.
        • Rubin H.R.
        • Jaar B.G.
        • Powe N.R.
        Use of dialysis educators beyond nurses and physicians and outcomes in patients with kidney failure.
        Adv Chronic Kidney Dis. 2005; 12: 424-432
        • Vilaplana J.M.G.
        • Zampieron A.
        • Craver L.
        • Buja A.
        Evaluation of psychological outcomes following the intervention ‘teaching group’: study on predialysis patients.
        J Renal Care. 2009; 35: 159-164
        • Levin A.
        • Lewis M.
        • Mortiboy P.
        • et al.
        Multidisciplinary predialysis programs: quantification and limitations of their impact on patient outcomes in two Canadian settings.
        Am J Kidney Dis. 1997; 29: 533-540
        • Fadem S.Z.
        • Walker D.R.
        • Abbott G.
        • et al.
        Satisfaction with renal replacement therapy and education: the American Association of Kidney Patients survey.
        Clin J Am Soc Nephrol. 2011; 6: 605-612
        • St Clair Russell J.
        • Boulware L.E.
        End-stage renal disease treatment options education: What matters most to patients and families.
        Semin Dial. 2018; 31: 122-128
        • Chu C.
        • McCulloch C.
        • Banerjee T.
        • et al.
        Centers for Disease Control and Prevention Chronic Kidney Disease Surveillance Team. CKD awareness among US adults by future risk of kidney failure.
        Am J Kidney Dis. 2020; 76: 174-183
        • Dharmarajan S.H.
        • Bragg-Gresham J.L.
        • Morgenstern H.
        • et al.
        State-level awareness of chronic kidney disease in the U.S.
        Am J Prev Med. 2017; 53: 300-307
        • Wright J.A.
        • Wallston K.A.
        • Elasy T.A.
        • Ikizler T.A.
        • Cavanaugh K.L.
        Development and results of a kidney disease knowledge survey given to patients with CKD.
        Am J Kidney Dis. 2011; 57: 387-395
        • Stiggelbout A.M.
        • Pieterse A.H.
        • De Haes J.C.J.M.
        Shared decision making: concepts, evidence, and practice.
        Patient Educ Couns. 2015; 98: 1172-1179
        • Mollicone D.
        • Pulliam J.
        • Lacson Jr., E.
        The culture of education in a large dialysis organization: informing patient-centered decision making on treatment options for renal replacement therapy.
        Semin Dial. 2013; 26: 143-147
        • Légaré F.
        • O’Connor A.M.
        • Graham I.D.
        • Wells G.A.
        • Tremblay S.
        Impact of the Ottawa Decision Support Framework on the agreement and the difference between patients’ and physicians’ decisional conflict.
        Med Decis Making. 2006; 26: 373-390
        • Parvez S.
        • Abdel-Kader K.
        • Pankratz V.S.
        • Song M.K.
        • Unruh M.
        Provider knowledge, attitudes, and practices surrounding conservative management for patients with advanced CKD.
        Clin J Am Soc Nephrol. 2016; 11: 812
        • Harwood L.
        • Clark A.M.
        Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies.
        Int J Nurs Stud. 2013; 50: 109-120
        • Saeed F.
        • Ladwig S.A.
        • Epstein R.M.
        • Monk R.D.
        • Duberstein P.R.
        Dialysis regret: prevalence and correlates.
        Clin J Am Soc Nephrol. 2020; 15: 957-963
        • Hickman R.L.
        • Daly B.J.
        • Lee E.
        Decisional conflict and regret: consequences of surrogate decision making for the chronically critically ill.
        Appl Nurs Res. 2012; 25: 271-275
        • Combs S.A.
        • Culp S.
        • Matlock D.D.
        • Kutner J.S.
        • Holley J.L.
        • Moss A.H.
        Update on end-of-life care training during nephrology fellowship: a cross-sectional national survey of fellows.
        Am J Kidney Dis. 2015; 65: 233-239
        • Lindberg J.S.
        • Husserl F.E.
        • Ross J.L.
        • et al.
        Impact of multidisciplinary, early renal education on vascular access placement.
        Nephrol News Issues. 2005; 19 (41-43): 35-36
        • Ladin K.
        • Buttafarro K.
        • Hahn E.
        • Koch-Weser S.
        • Weiner D.E.
        “End-of-life care? i’m not going to worry about that yet.” Health literacy gaps and end-of-life planning among elderly dialysis patients.
        Gerontologist. 2017; 58: 290-299
        • Narva A.S.
        • Norton J.M.
        • Boulware L.E.
        Educating patients about CKD: the path to self-management and patient-centered care.
        Clin J Am Soc Nephrol. 2016; 11: 694
        • Wright J.A.
        • Wallston K.A.
        • Elasy T.A.
        • Ikizler T.A.
        • Cavanaugh K.L.
        Development and results of a kidney disease knowledge survey given to patients with CKD.
        Am J Kidney Dis. 2011; 57: 387-395
        • Morony S.
        • Flynn M.
        • McCaffery K.J.
        • Jansen J.
        • Webster A.C.
        Readability of written materials for CKD patients: a systematic review.
        Am J Kidney Dis. 2015; 65: 842-850
        • Wu I.W.
        • Wang S.Y.
        • Hsu K.H.
        • et al.
        Multidisciplinary predialysis education decreases the incidence of dialysis and reduces mortality—a controlled cohort study based on the NKF/DOQI guidelines.
        Nephrol Dial Transplant. 2009; 24: 3426-3433
        • Saldaña J.
        The Coding Manual for Qualitative Researchers.
        Sage, 2015
        • Kimberly A.N.
        Content Analysis Guidebook.
        Sage, 2011
        • Saggi S.J.
        • Allon M.
        • Bernardini J.
        • et al.
        Considerations in the optimal preparation of patients for dialysis.
        Nat Rev Nephrol. 2012; 8: 381
        • Légaré F.
        • O’Connor A.C.
        • Graham I.
        • et al.
        Supporting patients facing difficult health care decisions: use of the Ottawa Decision Support Framework.
        Can Fam Phys. 2006; 52: 476-477
        • Creswell J.W.
        Qualitative Inquiry and Research Design: Choosing Among Five Approaches.
        Sage, 2016
        • US Government Centers for Medicare and Medicaid Services
        Toolkit for making written material clear and effective.
        • Koch-Weser S.
        • Dejong W.
        • Rudd R.E.
        Medical word use in clinical encounters.
        Health Expect. 2009; 12: 371-382
        • Fetters M.D.
        • Curry L.A.
        • Creswell J.W.
        Achieving integration in mixed methods designs—principles and practices.
        Health Serv Res. 2013; 48: 2134-2156
        • Narva A.S.
        • Norton J.M.
        • Boulware L.E.
        Educating patients about CKD: the path to self-management and patient-centered care.
        Clin J Am Soc Nephrol. 2016; 11: 694-703
        • O’Hare A.M.
        • Richards C.
        • Szarka J.
        • et al.
        Emotional impact of illness and care on patients with advanced kidney disease.
        Clin J Am Soc Nephrol. 2018; 13: 1022-1029
        • Ishikawa H.
        • Yano E.
        Patient health literacy and participation in the health-care process.
        Health Expect. 2008; 11: 113-122
        • Cassidy B.P.
        • Harwood L.
        • Getchell L.E.
        • Smith M.
        • Sibbald S.L.
        • Moist L.M.
        Educational support around dialysis modality decision making in patients with chronic kidney disease: qualitative study.
        Can J Kidney Health Dis. 2018; 5 (2054358118803323)
        • Squiers L.
        • Peinado S.
        • Berkman N.
        • Boudewyns V.
        • McCormack L.
        The health literacy skills framework.
        J Health Commun. 2012; 17: 30-54
        • Doak C.C.
        • Doak L.G.
        • Root J.H.
        Teaching Patients with Low Literacy Skills.
        Lippincott, 1985
        • Morton R.L.
        • Tong A.
        • Howard K.
        • Snelling P.
        • Webster A.C.
        The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.
        Br Med J. 2010; 340: c112
        • Humalda J.K.
        • Klaassen G.
        • de Vries H.
        • et al.
        A self-management approach for dietary sodium restriction in patients with CKD: a randomized controlled trial.
        Am J Kidney Dis. 2020; 75: 847-856
        • Richards N.
        • Harris K.
        • Whitfield M.
        • et al.
        Primary care-based disease management of chronic kidney disease (CKD), based on estimated glomerular filtration rate (eGFR) reporting, improves patient outcomes.
        Nephrol Dial Transplant. 2008; 23: 549-555
        • Levin A.
        The need for optimal and coordinated management of CKD.
        Kidney Int Suppl. 2005; 99: S7-S10