Individuals with kidney failure who elect to start dialysis theoretically can choose between in-center hemodialysis and home dialysis. Both modalities have similar clinical and patient-reported outcomes.1 Because there are few absolute contraindications to either type of therapy, modality choice should primarily be based on patients' preferences. However, home dialysis use has remained <15% in the United States despite studies that show at least half of patients prefer it when educated about their choices.2
The numbers are even lower for Black and Hispanic patients. In 2022, Black and Hispanic patients comprised 34% and 21% of the in-center dialysis population but only 24% and 18% of the home dialysis population, respectively. In the past 15 years, though, US home dialysis rates have doubled. Encouragingly, gains were seen in every racial/ethnic group.3 Disappointingly, though, this did not translate into a change in the racial/ethnic disparity in home dialysis initiation.
Multiple factors at many levels contribute to this persistent gap in care. Studies have consistently shown that disparities narrow when adjusted for factors that are not only associated with lower rates of home dialysis use but also more prevalent among Black and Hispanic patients.4 These include clinical factors such as diabetes and obesity as well as numerous socioeconomic factors such as community-level educational attainment; income; and, the focus of the article by Shukla et al., published in this issue of JASN, predialysis nephrology care.5 This is not surprising because patients can only choose to initiate dialysis on a home modality if they are educated about it, and it is unlikely that they will receive kidney modality education (KDE) without having seen a nephrologist. The magnitude of the contribution of each of these individual factors to racial disparities in care, though, has not previously been well explored.
In their study, Shukla et al. used mediation analysis to formally measure how much of the racial and ethnic disparity in the initiation of dialysis on a home modality is attributable to differences in predialysis nephrology care and KDE. Using the United States Renal Data System, they focused on a US population of patients who initiated dialysis from 2010 to 2019 and had 6 months of predialysis Medicare coverage so that they could use claims data to determine whether a provider had billed for KDE before dialysis. Predialysis nephrology care was captured using the 2728 form, which is submitted for every US patient when they initiate KRT.
The findings were sobering, but not surprising. Of the nearly half million patients studied, 34% had not received any predialysis nephrology care. The numbers were even higher for Black and Hispanic patients: 42% and 43%, respectively. Only 1.5% of all patients had a claim for KDE; this percentage was only 1% for Black and Hispanic patients. This is likely an underestimate of the actual rates of KDE, although the racial and ethnic disparities in KDE are consistent with prior studies. Overall, only 8% of patients initiated dialysis on a home modality, which included peritoneal dialysis (PD) and home hemodialysis. Again, the numbers were lower for Black and Hispanic patients: 6% and 7%, respectively.
The authors next examined the association between potential mediators of these disparities, predialysis nephrology care and KDE, and the outcome of home dialysis use. Patients who had received any predialysis nephrology care were more than four times as likely to have also had a KDE claim. They were also more than four times as likely to have started on home dialysis and more than twice as likely to be on home dialysis at day 90 and day 365 of dialysis. These associations persisted in models adjusted for age, sex, diabetes, heart failure, atherosclerotic heart disease, and hypertension. Surprisingly, in analyses restricting the outcome to home hemodialysis use, predialysis nephrology care was associated with lower rates of home hemodialysis use, whereas KDE was not associated with home hemodialysis use. These unexpected findings may have stemmed from the practice of older, frail patients, who are disproportionately represented in this study population of patients with predialysis Medicare coverage, receiving hemodialysis in skilled nursing facilities that are billed as home hemodialysis.
The mediation analysis estimated that lack of predialysis nephrology care accounted for 14% and a staggering 30% of the disparity in Black and Hispanic patients' use of home dialysis. The findings were consistent in models adjusted for demographics, comorbidities, profit status of the facility, rurality, and low-income status of the patient. The mediation effect was sustained but lower when examining home dialysis on day 90 and day 365 of dialysis. The findings were driven primarily by trends in PD use. Of note, this is likely an underestimate of the effect in the overall US population because the study population was limited to patients who had Medicare insurance, while Black and Hispanic patients are disproportionally uninsured or solely covered by Medicaid.
The study confirmed what we have known for some time that predialysis nephrology care, and modality education in particular, is critical for patients to make an informed decision about their dialysis modality, regardless of their race or ethnicity. A systematic review found that patients who had received an educational intervention were more than four times as likely to choose PD and more than three times as likely to receive PD as their first modality.6
Unfortunately, Black and Hispanic patients are less likely to receive predialysis nephrology care and adequate modality education for a variety of reasons. They tend to have lower incomes, lower rates of insurance, and higher rates of living in communities with limited health resources.7 In addition, they also have less effective communication with their kidney disease treatment team, stemming in part from lack of trust and lack of culturally tailored care. For many Hispanic patients, this is compounded by language barriers, which may explain why the mediation effect for Hispanic patients was twice that of Black patients.8
The importance of this study is that it put a number on these effects: There is a clear need for solutions when 15%–30% of racial and ethnic disparities can be attributed to a single factor. This is a call to action to improve access to predialysis nephrology care and KDE for patients of all races and ethnicities. KDE should be tailored to patients' needs. At a minimum, it needs to be provided in the language patients and their care partners speak. Using community health workers from the patients' own communities as educators to deliver culturally tailored education has been shown to increase the effectiveness and improve the outcomes of Black and Hispanic patients.9 Black and Hispanic patients are more likely to unexpectedly initiate dialysis as inpatients. It is possible to provide high-quality modality education for inpatient acute starts that can increase home dialysis rates among these patients.10
On an even broader level, it is striking is that even among those who received predialysis nephrology care, only 12% started on home dialysis, even among White patients. One reason is that beyond receipt of predialysis education, many additional barriers in the United States still have yet to be overcome to facilitate further use of home dialysis. Another reason is that although modality education may have been sufficient enough to tick a box of receipt, within the limitations of the study one cannot assess the quality and nature of the education received. The low rate of home dialysis use after KDE in the study by Shukla et al. stands in stark contrast to the National Pre-ESRD Education Initiative. Over two decades ago, the value of predialysis education was first noted in the Education Initiative study, one of the largest predialysis education programs to date (932 referring nephrologists throughout the United States). Unlike in the present study, rates of home dialysis use after education were much higher, with 45% of the 2580 patients who completed questionnaires at the end of the Education Initiative having selected PD as their modality, among which 75% started PD.11
What constitutes high-quality dialysis modality education? In addition to being culturally and language specific, multimodal, and personalized, it must extend beyond modality education and also provide comprehensive decision support by all kidney care team members during what is arguably one of the most challenging times in many patients' lives. Transition to dialysis is a period often accompanied by fear, denial, and disbelief in facing a diagnosis of kidney failure. For education to be effective and empower patients to consider and choose home dialysis, one must truly understand the patient's and care team's values and goals of care, assess readiness to accept the diagnosis of kidney failure, take action, and provide support, which often needs to involve intimate interactions, which occur over several sessions involving the whole patient's care circle. Such a program would not only stand to improve rates of home dialysis but could also improve patient outcomes in the transition to dialysis, including increases in rates of kidney transplantation and surgical arterio-venous access creation (factors that were not explored in the present study).
By centering the margins by deploying interventions to overcome the barriers that Black and Hispanic patients face to home dialysis, and recognizing the crucial role of predialysis care and education, we will inevitably improve access for patients of all backgrounds.
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 JASN. Responsibility for the information and views expressed herein lies entirely with the authors.
Footnotes
See related article, “Race- and Ethnicity-Related Disparities in Predialysis Nephrology Care, Kidney Disease Education, and Home Dialysis Utilization,” on pages 122–132.
Disclosures
Disclosure forms, as provided by each author, are available with the online version of the article at http://links.lww.com/JSN/E966.
Funding
None.
Author Contributions
Writing – original draft: Jenny I. Shen.
Writing – review & editing: Jeffrey Perl.
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