By Grace H. Kim, Research Associate
The recent publication, “Recommendations for Systematizing Transplant Education Within a Care Delivery System for Patients with Chronic Kidney Disease Stages 3 to 5”1 by Waterman et al., discusses the findings from a telephone survey of 40 kidney patients, 13 support persons, and 10 providers who were asked about barriers to transplant education and their educational preferences. This review highlights the key barriers identified by chronic kidney disease (CKD) and end-stage kidney disease (ESKD) patients and their support persons and the recommended steps for improving access to educational resources.
Around 30 million Americans are living with chronic kidney disease (CKD), 2 a progressive loss of kidney function. A 10-year study found that about 50% of patients with CKD stage 3—early kidney disease—ultimately progress to ESKD, or kidney failure, requiring dialysis or transplant to sustain life.3 Although living donor kidney transplant (LDKT) is the optimal treatment option for ESKD, LDKT rates have declined since 2004,4 with only 1.2% being pre-emptive transplants.5 Pre-emptive kidney transplants are performed before a patient’s kidney function deteriorates to the point of needing dialysis, and they have better outcomes than transplants performed once a patient has already begun dialysis treatments.
In order to help kidney patients be ready to make choices about their treatment options before full kidney failure sets in, it is recommended by the Organ Procurement and Transplantation Network (OPTN) and the American Society of Transplantation Consensus Conference, that transplant education begin in CKD Stage 3.6,7 This allows patients who do wish to pursue a transplant to decrease their waitlist time by identifying a living donor. Yet not every patient receives transplant education at this time. Nephrologists often report that patients with CKD Stage 3 to 4 are too overwhelmed and confused about their CKD diagnosis and are not interested in learning about transplant, but patients in CKD stage 5/ESKD report wanting to learn about transplant earlier.8 This pattern of information-seeking readiness was expressed by some patients in this study.
In order to better understand common barriers to transplant education, as well as patient’s educational preferences, 40 patients with CKD stages 3 to 5, 13 support persons, and 10 providers within the Kaiser Permanente Southern California (KPSC) health system were interviewed. KPSC manages the care of nearly 65, 000 diverse patients with CKD stages 3 to 5, with a fully integrated care management program that provided the unique opportunity to evaluate the quality, modality, and timing of education delivered and how they differ between CKD stages in a standardize health care system.
Patients, support persons (like family members or caregivers), and providers reported multiple difficulties when thinking about transplant, including confusion about how to get on the waitlist, when transplant is necessary, fears and misconceptions about transplant, and difficulty navigating the healthcare system. At the individual level, many patients reported that they felt overwhelmed with their CKD diagnosis and were not ready to think about transplant. Patients were afraid of burdening their family and other support persons during transplant evaluation, surgery, and recovery as a significant reason for not pursuing transplant.
From a systems perspective, patients faced difficulty using interpreter services if they were not English speakers, and had difficulty finding transportation to and from the transplant center, as well as scheduling appointments. Many patients specifically reported difficulties in attending transplant education classes and evaluation appointments due to inability to take time off work to go to appointments during regular business hours.
Both patients and support persons expressed concerns when thinking of possibly having to take time off work for transplant evaluation, surgery, and recovery as another hurdle when pursuing transplant. Importantly, patients were concerned about the financial costs of ESKD management and transplant care. They mentioned concerns over being able to afford immunosuppressant medications post-transplant.
Analysis of the patient, support person, and provider interviews pointed to key improvements that can serve as a framework for developing better educational delivery pathways and materials. These include providing:
- An earlier introduction to transplant, even if prevention is the frame.
- Information about how to get on the transplant wait-list.
- Information about how to approach potential living donors.
- Culturally sensitive, multilingual, and digestible transplant education.
- Information about financial resources for transplant patients, donors, and support persons.
While the transplant community continues to wrestle with the best timing for initiating transplant education with CKD patients, this study found that patients with CKD Stages 3 to 4 are interested in information about CKD management, avoiding transplantation, and transplant wait-listing. Further study to test the effectiveness of modular, culturally sensitive and health literate education tailored to the patients’ CKD stage, primary language and support persons is needed. In agreement with previous findings and recommendations, patients prefer more time to learn about transplant, identifying living donors and getting on the wait-list. Early tailored chronic kidney disease, end-stage kidney disease, and transplant education could help patients make informed choices to slow down the progression to end-stage kidney disease, and also help patients to be more prepared when the time for dialysis or transplant approaches.
- Waterman A LA, Ranasinghe, ON, Wood EH, Anderson C, Bozzolo C, Henry S, Dub B, Mittman B. Recommendations for Systematizing Transplant Education within a Care Delivery System for Patients withChronic Kidney Disease Stages 3-5. Progress in Transplantation. 2020.
- United States Renal Data System. 2016 USRDS annual data report: Epidemiology of kidney disease in the United States. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases;2016.
- Baek SD, Baek CH, Kim JS, Kim SM, Kim JH, Kim SB. Does stage III chronic kidney disease always progress to end-stage renal disease? A ten-year follow-up study. Scandinavian Journal of Urology and Nephrology. 2012;46(3):232-238.
- Organ Procurement and Transplantation Network. Data Reports. HRSA. https://optn.transplant.hrsa.gov/data/view-data-reports/state-data/. Published 2016. Accessed June 29, 2016.
- Hart A, Smith JM, Skeans MA, et al. OPTN/SRTR 2016 Annual Data Report: Kidney. Am J Transplant. 2018;18 Suppl 1:18-113.
- Educational Guidance on Patient Referral to Kidney Transplantation. https://optn.transplant.hrsa.gov/resources/guidance/educational-guidance-on-patient-referral-to-kidney-transplantation/: Organ Procurement and Transplantation Network (OPTN) Minority Affairs Committee;September 2015. Access Date: July 11, 2018.
- LaPointe Rudow D, Hays R, Baliga P, et al. Consensus conference on best practices in live kidney donation: recommendations to optimize education, access, and care. Am J Transplant. 2015;15(4):914-922.
- Fishbane S, Nair V. Opportunities for Increasing the Rate of Preemptive Kidney Transplantation. Clinical journal of the American Society of Nephrology : CJASN. 2018;13(8):1280-1282.