Getting the Right Care at the Right Time: Empowering Patients with Effective CKD Modality Education

Most new dialysis patients start dialysis without permanent access and unaware of home therapies. Making informed decisions and starting with a permanent access are strongly associated with patients getting the right care at the right time. Northwest Kidney Centers, a nonprofit dialysis provider, has made a significant commitment to predialysis modality education. We educate about 300 patients per year, plus their families and friends. About 30 percent of our incident dialysis patients have attended our classes before starting renal replacement therapy. The focus is simple: help patients consider home therapies and renal transplantation, and start dialysis with a permanent access.

These are some elements essential to effective education:

The primary responsibility of program educators is education about chronic kidney disease (CKD). We have a dedicated CKD nurse and a social worker who are knowledgeable and passionate about modality education.

  • Program structure is flexible, is widely available, and provides the right amount of information. Scheduling and location should not be barriers for patients. We offer Choices, a 2.5-hour class that gives an overview of treatment options, four times a month, each at a different location in our service area. We see patients individually when education is needed urgently, if an interpreter is required, or if concerns need to be discussed privately. We use a phased model for education because every patient needs to know the basics, but some may need more information. After attending the Choices overview class, a patient can attend “graduate school”—shorter classes focused on one modality (peritoneal dialysis, home hemodialysis, or transplantation). These “next step” classes provide more in-depth information and emphasize treatment planning.

    The right curriculum is key. We have developed a curriculum that is understandable, is relatable, and facilitates informed consent based on three principles: Health literacy: The CKD population and the low health literacy population overlap. We use standardized PowerPoint materials with minimal words, many pictures, and stories. All handouts are written at a 5th to 6th grade reading level. Patient-centered: The choice of a dialysis modality is a psychosocial one, made in the context of personal goals and lifestyle. To make education relevant, we try to understand the patient’s personal situation rather than simply present information. Evidence-based: Educating for informed consent means presenting understandable and compelling facts on survival, risks, and benefits.

    CKD patients must be reached at the right time. The KDOQI guidelines state that every patient with stage 4 disease should receive modality education. Dialysis providers have access to CKD patients only through nephrologists’ referrals. Marketing to nephrologists is essential to create a culture in which referral to modality education is routine and expected. We emphasize the value to the nephrologist of having an educated patient—better patient compliance, better outcomes, and time saved in the office. We provide literature and posters in offices, reminders in our publications directed to nephrologists, reminders at meetings, and informal contacts from our staff and from the highest level in the organization. We look for a nephrologist “champion” in every group, and we partner with office staff to facilitate the referral process. After we receive referrals from nephrologists, we make several attempts to reach patients and to track those who refuse treatment or are unreachable. With aggressive follow-up on all referrals, 80 to 90 percent of referred patients attend our classes.

    Continuing communication with nephrologists is a must. We keep the referring nephrologists in the loop at every step. We report whether a patient attends, summarize the patient’s modality preference, and discuss any barriers. Feedback underscores the credibility and effectiveness of our program. We give nephrologists “report cards” that show how many of their patients attended class, how many new patients started peritoneal dialysis, and how many started hemodialysis with permanent access. Every report reiterates outcomes data that support the efficacy of our program: Attendees are 2.5 times more likely to choose peritoneal dialysis and 44 percent more likely to start hemodialysis with a permanent access in place and in use.

    The immediate goal of education is not education—it is action. Patients may leave class planning on peritoneal dialysis but then start later with in-center hemodialysis. To address this, we retooled the Choices curriculum to focus on coaching patients to take the next step, priming patients to go back to their nephrologist with specific questions (“Am I a candidate for peritoneal dialysis?” “When should I get a peritoneal dialysis access?”) and to actively plan (e.g., plan for peritoneal dialysis at work and figure out home supply storage).

  • We are also piloting a patient navigation program for Choices attendees who are interested in home dialysis that includes routine telephone contacts with the CKD nurse educator, who provides guidance toward treatment goals.

    The right care at the right time benefits patients, nephrologists, and dialysis providers. Timely and effective modality education empowers patients to take actions that improve their health and quality of life. But it takes significant and thoughtful institutional commitment to make a program successful. We believe that the impact on the long-term quality outcomes of our organization makes it a worthwhile investment.

    Notes

    [1] Leanna B. Tyshler, MD, and Mary Dooley, MSW, are affiliated with Northwest Kidney Centers in Seattle, WA.

    Suggested Reading

    1.United States Renal Data System 2011.

    2.Mehrota R, Marsh D, Vonesh E, et al. Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis. Kidney Int 2005; 68:378–390.

    3.Leibman SE, Bushinsky DA, Dolan JG, et al. Differences between dialysis modality selection and initiation. Am J Kidney Dis 2012; 59:550–557.

    August 2012 (Vol. 4, Number 8)