Transplantation is the optimal treatment for many people with kidney failure, yet most patients initiate treatment on dialysis. Virtually all of these incident dialysis patients receive in-center hemodialysis at a dialysis facility under the care of an interdisciplinary team of dialysis care professionals, typically including a nephrologist, social worker, nurse, and dietitian. Shortly after most patients first arrive at the facility, the interdisciplinary dialysis care team is expected to begin educating them about transplant as a treatment option while preliminarily assessing their suitability for and interest in transplant.

For many patients who initiate dialysis unexpectedly, often having received little or no prior nephrology care, this early transplant education represents their first exposure to information about different kidney failure treatment modalities. These patients must often absorb a considerable amount of new information while learning to manage life on dialysis, and they may appear overwhelmed by “information overload” when first receiving transplant-related education.1 Moreover, this patient population may be at heightened risk for receiving delayed or limited transplant education, despite facing greater transplant-related knowledge deficits at incidence compared with patients whose first dialysis treatment is planned.2

In the course of 39 in-depth interviews with nephrologists, nurses, dietitians, and social workers during summer 2022, dialysis care professionals spoke to these concerns about the timing and quality of transplant education that patients receive at the dialysis facility.3 Preliminary findings from this qualitative study suggest that when patients who initiate dialysis unexpectedly first arrive at the dialysis facility, often after hospitalization, many dialysis care professionals' first instinct may be to delay the provision of transplant-related education until the patient has had time to “acclimate” to life on dialysis.

Although efforts to accommodate the perceived needs of these patients are well intentioned, approaches to providing transplant education during this early period are highly consequential for patients' decisions along the kidney care pathway and access to transplant downstream. Access to timely, comprehensive transplant education at the dialysis facility is associated with increased patient interest in pursuing transplant evaluation, likelihood of waitlisting, and transplant receipt.4,5 Recognizing the downstream advantages of timely transplant education, the Centers for Medicare & Medicaid Services 2728 Medical Evidence form requires reporting whether the patient was informed about kidney transplant within 45 days of kidney failure onset. Yet recent evidence using these form's data suggests that dialysis facilities vary substantially in the quality and comprehensiveness of the transplant education they provide, and the Centers for Medicare & Medicaid Services 2728 form cannot adequately illuminate this variation.6

Transplant education is often an iterative process that unfolds over time, and delaying this process risks missing early opportunities to deliver needed information to patients when they can start internalizing and using it. Notably, patient groups who often experience diminished access to timely transplant education—including historically marginalized patients and patients who are uninsured, underinsured, or Medicaid-insured—are also overrepresented among patients who initiate dialysis unexpectedly.4,7 Thus, dialysis facility–level patterns of delaying transplant education for this patient population may widen racial, ethnic, and socioeconomic disparities in access to early transplant education.

Many of the dialysis care professionals we interviewed recognized the distinctive needs of these patients and described tailoring their approach to transplant education accordingly. Several interviewees, such as one social worker we talked to, reported that patients who unexpectedly initiate dialysis “tend to be very overwhelmed” when they arrive at the dialysis clinic, and transplant is not among their primary concerns. A different social worker illustrated this point well:

“Most of the patients, when they’re crashing into dialysis, they kind of look at you sideways when you say something about transplants.”

In responding to this observation, dialysis care professionals described delaying the provision of transplant education to give patients time to “feel well enough” and adjust to dialysis before bringing up transplant. As another social worker shared:

“Some of the timing of [transplant education] depends upon how sick someone feels when they start.”

One charge nurse we spoke to further characterized this common approach:

“We give them...2–3 weeks, maybe a month, to get acclimated to what’s goin’ on in here…. [Transplant is] not something we mention when they first get here.”

Other dialysis care professionals recognize the potentially deleterious effects of delaying transplant education for patients who initiated dialysis unexpectedly. With delayed transplant education, patients might accept the dialysis clinic as their “new normal.” These patients may come to view the dialysis clinic as a source of stability and comfort in contrast with the additional life disruption the transplant evaluation process could cause, even if a transplant would likely lead to better survival and quality of life downstream. As one nephrologist shared:

“There’s some kind of inertia that happens in dialysis. Once a person starts dialysis and gets into the routine of it, it’s like they slowly kind of lose their will…. They kind of just get stuck. And they don’t want to disrupt the routine that they get [in the dialysis center].”

A nurse manager echoed this sentiment:

“I feel the sooner the better that we can start puttin’ transplant in their brains. Because once they’re here in the dialysis clinic for an extended period of time, they get comfortable sitting on the fence. If you don’t introduce [transplant] early on, it’s very difficult to get the patients on board.”

The diminishing motivation to pursue transplantation among patients who unexpectedly initiate dialysis, driven in part by their dialysis care professionals affording them patience and the comfort of a dialysis routine, may help to explain how delaying the provision of transplant education can lead patients to dismiss opportunities to pursue transplant over the longer term. This potential mechanism may also help explain the disparity in transplant access between patients who unexpectedly initiate dialysis and those whose first dialysis treatment is planned. Future research could explore patients' diminished interest in transplant over time as a potential mechanism driving the negative association between length of time on dialysis and the likelihood of transplant waitlisting.

Although meeting these patients' distinctive needs for timely transplant education is critical for improving equitable access to transplant, doing so may require innovative approaches to education. Several validated, person-centered education interventions exist to meet this population's specific learning needs and can effectively facilitate the delivery of timely education on treatment modality alternatives.8,9 Informed by multiple learning theories, these interventions often train specialist nurses to provide enhanced education using evidence-based, multimedia decision aids at pivotal points along patients' kidney care pathways. Some interventions for patients who unexpectedly initiate dialysis, such as the Acute Start Dialysis Education and Support program at Toronto General Hospital, have focused on enhancing patient knowledge before hospital discharge to foster informed decision making about home peritoneal dialysis.9 These interventions demonstrate how focused, patient-centered education programs—using curricula designed to meet the learning needs of critically ill patients adjusting to life on dialysis—and coordinated education efforts across the dialysis care team can equip health care professionals to effectively deliver timely education to patients who unexpectedly initiate dialysis. We believe these interventions could be adapted to integrate information about transplantation.

Notably, not all dialysis care professionals delay or limit transplant education for this patient population. Many, including one nurse manager we interviewed, aim to “treat everybody the same” and “give everybody [the] same education.” However, like delaying transplant education for some patients, the approach of delivering equal transplant education to all patients may also inadvertently perpetuate inequities in transplant education. Because structural racism often differentially shapes patients' access to nephrology care and early transplant education, patients from historically marginalized groups may, on average, experience greater transplant knowledge deficits than White and economically advantaged patients when they arrive at the dialysis facility. Consequently, when all patients receive equal transplant education, many patients will not get all the information they need, and race-based and class-based inequities in transplant knowledge and access will persist or worsen. Ultimately, neither selectively delaying nor standardizing transplant education will foster health equity among patients receiving dialysis treatment.

For patients who initiate dialysis unexpectedly, it is therefore essential that transplant education be individualized and timely. To foster individualized transplant education for patients newly initiating dialysis treatment, it may be critical to ensure that the patients are ready to receive this education without relying on health care professionals' subjective assessments of patient readiness. Interventions that incorporate computerized patient assessment tools may help dialysis care professionals recognize how ready patients are to receive education and identify where their knowledge gaps are, facilitating the efficient delivery of patient-centered, individualized transplant education. One such intervention, Your Path to Transplant, has been validated among patients referred for transplant evaluation.10 This tool could be adapted to meet the needs of patients initiating dialysis unexpectedly and could incorporate metrics by which to measure receipt of timely, comprehensive transplant education. In addition, educational interventions that blend patient-to-patient peer mentorship with patient–provider encounters may foster trust building and so enhance patients' receptiveness to new information and decision-making supports.11

Dialysis care professionals play a key role in helping patients learn about and access transplant. To ensure their transplant education offerings meet the diverse transplant education needs of all patients, including patients who initiate dialysis unexpectedly, they need clear protocols for providing transplant education that is timely, comprehensive, and person-centered. Interventions must be adapted or developed to deliver transplant education to patients with significant transplant knowledge deficits and those confronting physical, cognitive, and emotional challenges. Such interventions are essential to help ensure all patients with kidney failure receive the right information at the right time and are afforded the opportunity to pursue kidney transplantation with full information.

Disclosures

K. Jacob Arriola reports an advisory or leadership role as Dean of the graduate school at Emory (paid) and Study section chair for NIH (paid). S.O. Pastan reports an advisory or leadership role for BOD ESKD Network 6 and BOD of the National Forum of Networks, on the Advisory Board for the nonprofit Kidney Transplant Collaborative, and as an Associate Editor of Kidney International Reports. S.O. Pastan's wife owns Johnson & Johnson stock. R.E. Patzer reports advisory or leadership role on the Editorial Board of American Journal of Transplantation, CJASN Editorial Board, and as Chair of United Network for Organ Sharing Data Advisory Board. R.E. Patzer's spouse is a chief medical officer at Vital ER and reports ownership interest in Vital Software. A.S. Wilk reports ownership interest in UnitedHealthGroup. All remaining authors have nothing to disclose.

Funding

A.S. Wilk: National Institute of Diabetes and Digestive and Kidney Diseases (K01-DK128384).

Acknowledgments

The content of this article reflects the personal experience and views of the authors and should not be considered medical advice or recommendation. The content does not reflect the views or opinions of the American Society of Nephrology (ASN) or CJASN. Responsibility for the information and views expressed herein lies entirely with the authors.

Author Contributions

Conceptualization: Jenny L. McDonnell, Adam S. Wilk.

Data curation: Jenny L. McDonnell, Adam S. Wilk.

Formal analysis: Jenny L. McDonnell.

Funding acquisition: Adam S. Wilk.

Methodology: Jenny L. McDonnell, Adam S. Wilk.

Project administration: Adam S. Wilk.

Resources: Jenny L. McDonnell, Adam S. Wilk.

Software: Jenny L. McDonnell.

Supervision: Adam S. Wilk.

Writing – original draft: Jenny L. McDonnell.

Writing – review & editing: Kelsey M. Drewry, Cam Escoffery, Kimberly Jacob Arriola, Janice P. Lea, Jenny L. McDonnell, Stephen O. Pastan, Rachel E. Patzer, Megan A. Urbanski, Adam S. Wilk.

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