Clinicians need to improve education efforts among patients with CKD
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Nephrologists and the kidney care team need to improve efforts at educating patients about dialysis.
The following are some examples:
- When explaining the need for fluid monitoring, a patient who had been receiving hemodialysis for 18 months was amazed to hear that her kidneys did not work.
- During treatment, a patient on in-center hemodialysis mentioned he would like to donate his kidneys, “since I don’t need them anymore.”
The new Kidney Care Choices demonstration (see page 12 of this issue) will provide care to patients with chronic kidney disease. But if our patients receiving dialysis do not understand kidney disease, how can we expect them, in CKD stage 3, 4 and 5, to manage their disease and delay progression?
The Kidney Disease Education (KDE) program was rolled out with grand fanfare by CMS in 2012.1,2 The National Kidney Foundation and American Society of Nephrology were supportive, and CMS agreed to pay six classes for each beneficiary at stage 4 CKD with the goal of slowing the progression to end-stage renal disease.
However, in 2018 (the most recent data), only 4,301 individual classes and 1,401 group classes had been billed to CMS.3 This is from a potential audience of 8.1 million stage 4 patients.
The percentage of CKD stage 4 was calculated by using the percentage of the 2013–2016 NHANES Survey estimates of the USRDS and the CKD-EPI equation. The number of adults with CKD stages 4 was estimated by calculating the overall percentage (0.025%) to the 2016 US Census population (323.1 million).
In essence, less than 1% of the eligible beneficiaries are given KDE classes.4 Is it any wonder why 80% of new starts in 2018 initiated treatment with a catheter? 5
In 2012, advanced practitioners (APs), physician assistants (PAs), nurse practitioners (NPs) and clinical nurse specialists (CNSs), collectively, were responsible for 74% of group classes and 34% of individual classes.6 Thus, we went back to the source and asked APs why education was not living up to its promise.7 What we were told took us by surprise.
Patient input
The issues are that education is “not patient centered, not patient directed” and often not always when, where or how patients want it to be, the APs said.
We have a plethora of information available to share, including books, pamphlets, slides in Spanish and English, and YouTube abound with videos; some great, some good and some downright scary. Every dialysis organization has education materials and many practices have developed their own.8 What are we missing? Is it a lack of early referral to nephrology? Is it a lack of education? Misunderstanding? Fear? Denial? The answer is all of the above, plus more. Our queries to APs in the kidney community did not come up with a solution, but we heard some suggestions and some techniques that work.
Ongoing education
The number one area is education. Education must be ongoing, a part of every patient encounter. But in a standard 20-minute office visit, after we have reviewed medications, discussed lab work, completed physical exam and made changes, how much time is left for education? And if there is time, how much will the patient comprehend and retain?
The likely answer to both questions is “not much.”
We have all the numbers and statistics to support permanent access. However, if the patients do not believe those numbers apply to them, are the numbers and statistics of value?
One AP suggested that while we offer great information, we fail to understand our patients’ wishes and desires. Most of our teaching materials do not make room to learn about patients’ hopes, goals, wishes, wants and needs.
We “give” education, but we need education about what is important to the patient. Many are faced with a loss of livelihood, disruption to family dynamics and body image changes. What can I eat? How can I sleep? These are real concerns that get lost in the talk about fluid management and bone health.
Practitioners in palliative care have developed techniques in having difficult conversations. In nephrology we need to take a lesson from their playbook.
Stage 3
Currently, Medicare pays for 6 hours of kidney disease education for stage 4 Medicare beneficiaries or stage 4 to 5 in some areas.1,2 Expanding this to stage 3 will allow more time for patients to internalize the information. In kidney disease, few patients experience overwhelming symptoms to herald kidney failure. This further supports denial. Many APs mention that they have to convince patients multiple times of the concept of “failing kidneys,” especially since the constitutional symptoms are so few.8Nephrology News & Issues readers may be familiar with Elizabeth Kubler-Ross and the five stages of grief.9 Our patients often experience these stages, sometimes simultaneously in more than one stage at a time. Likewise, patients’ education must be in several stages. Initially, they often do not hear anything at all for several reasons: denial and fear of being overwhelmed, to name a few. Is our education addressing their health literacy level? Are we considering cultural views? Group classes are good for disseminating information to a larger number of patients at one time, but these classes often need to be backed up with individual sessions. Patients’ support networks should be involved if possible. Several respondents mentioned that patients are often in some stage of uremia and their fear tactics rarely work. Facts are more effective than threats.
Peer counseling
One intervention that has received wide support is peer counseling. The difference to a patient of hearing “I know you are upset” coming from a provider and “I was so upset when I had to start dialysis” coming from a fellow patient is immense. Some respondents suggested the best peer counselors were those who initially resisted dialysis vehemently.
A major obstacle to early modality choice and access placement is what patients hear in the community. “My brother died on dialysis;” “If they put that tube in your stomach, you will get infected;” “My neighbor is on dialysis, and he feels bad all the time.” All are similar messages patients hear and believe.
Often initiating treatment with a catheter is more than a lack of early referral or education. Frequently it is financial.10
Surgeons and radiologists do not work gratis. For the uninsured patient or the patient with high copays and/or deductibles, it is a matter of waiting 90 days for their Medicare to kick in after they have started treatment with a catheter.11 Or, in some cases, insurance will only cover one vascular access placement per hospitalization. The 90-wait day is often enough time for at least one catheter infection, which further delays access placement. Adding to the 90 days is the time it takes to have an access placed and have it mature.
Plus, vascular interventions occur more than 50% of the time prior to the first use of the access.10 Because Medicare will cover payments for peritoneal dialysis (PD) from day 1, some practices will do a small flush at the time of catheter placement to have the procedure covered from that day.11
For patients who do not live in urban areas, access and transportation to a vascular surgeon is often a barrier.
The initial question in this article was what works and what does not in modality education. There is the recognition that we must offer tailored education that meets patients where they are. We need to stay patient centered and not focus on penalizing units and systems with high catheter rates.12
Dedicated vascular access coordinators have been successful and should be combined with provider support, peer support and family/community involvement.
One thing we know: One size does not fit all.
- References:
- 1. Coverage of Kidney Disease Education Patient Services, Section 152(b): Coverage of Kidney Disease Patient Education Services. 2009. Accessed July 7, 2009.
- 2. Federal Register. 2009;74(226):62003.
- 3. Complete 2018 Program Year Open Payments Dataset, CMS.gov. www.cms.gov/OpenPayments/Explore-the-Data/Dataset-Downloads. Accessed Feb. 16, 2020.
- 4. CDC. CKD information sheet, 2019. 5.www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf. Accessed Feb. 20, 2020.
- 5. United States Renal Data System. 2020 USRDS annual data report: End Stage Renal Disease in the United States. NIH, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, Md., 2020.
- 6. Davis JS, et al. Adv Chronic Kidney Dis. 2014;doi:10.1053/j.ackd.2014.03.0137.
- 7. Zuber K, et al. Am J Kidney Dis. 2012;doi:10.1053/j.ajkd.2012.02.324.
- 8. Zuber K, et al. Nephrol News Issues. 2012;26(2):20-1.
- 9. Kubler-Ross E. On death and dying: What the dying have to teach doctors, nurses, clergy and their own families, Simon and Schuster Inc. NY, 1969.
- 10. Allon M. Clin J Am Soc Nephrol. 2019;doi:10.2215/CJN.00490119.
- 11. CMS.gov. Coverage of end-stage renal disease, www.cms.gov/Medicare/Coordination- of-Benefits-and-14.Recovery/Coordination-of-Benefits-and-Recovery-Overview/End-Stage-Renal-Disease-ESRD/ESRD, Accessed March 20, 2020.
- For more information:
- Jane Davis, CRNP, DNP, is with the division of nephrology at the University of Alabama at Birmingham. She is also a member of the Editorial Advisory Board for Nephrology News & Issues. She can be reached at jsdavis@uabmc.edu.
- Kim Zuber, PAC, MS, is the executive director of the American Academy of Nephrology Physician Assistants. She can be reached at zuberkim@yahoo.com.
Perspective
Back to Top
Michael Allon, MD
Twenty-four years after the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative clinical practice guidelines on vascular access were first issued, the nephrology community continues to struggle with optimizing vascular access outcomes in patients on hemodialysis.
We all agree that central vein catheters (CVC) are the worst type of vascular access for hemodialysis, yet the proportion of patients initiating hemodialysis in the United States with a CVC remains distressingly high at 80%. What accounts for these dismal outcomes?
There is widespread consensus about the specific measures required to optimize vascular access outcomes. They include the following:
- early referral to a nephrologist;
- meaningful patient education about dialysis modalities and vascular access;
- timely referral to a surgeon for vascular access surgery;
- preoperative vascular mapping;
- structured postoperative assessment of AVF maturation;
- timely interventions to salvage immature AVFs; and
- ongoing training of dialysis staff in optimal cannulation techniques.
Why have all these efforts failed to substantially improve vascular access outcomes?
In their commentary, Davis and Zuber highlight the elephant in the room: we are not providing adequate dialysis education to our patients with chronic kidney disease.
The lion’s share of such education falls on advanced practitioners. Although we may think that we provide adequate education, that is not our patients’ perception. Our education provides the facts, but does not address the wishes, desires and fears of our patients. We usually do not reinforce the key messages. We fail to appreciate that patient decisions are influenced more by what they hear from family and friends rather than what they are told by their nephrologists, advanced practitioners or nurses.
We rarely utilize peer counseling, a powerful tool in patient education.
Davis and Zuber provide a clarion call to revamp the education of CKD patients to make it patient centered, in terms of content, venue of education, and greater use of peer counselors. It’s time we got serious about dialysis education.
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