Black and Hispanic people face a double-edged sword when it comes to kidney disease. Not only are they more likely to develop kidney failure, but those who do are less likely to receive a kidney transplant or undergo at-home dialysis, which are associated with improved health outcomes and a better quality of life.

Tanya Johns, MD, MHS, associate professor in the division of nephrology, has devoted her career to reducing these alarming disparities. She recently received her first National Institutes of Health (NIH) R01 grant, a three-year pilot study to examine the effectiveness of community health workers in helping more Black and Hispanic patients receive dialysis in the comfort of their homes.

Here, we talk to Dr. Johns about her research and the critical importance of reducing disparities related to kidney disease.

Tell us about the research being supported by your R01 and how it came about?

In 2019, the U.S. Department of Health and Human Services (HHS) established the Advancing American Kidney Health Initiative through a federal executive order. One of the mandates is that by 2025, 80 percent of new patients with end-stage kidney disease receive a kidney transplant or home dialysis.

Five years later, the home dialysis numbers stand at just 13 percent nationwide. The number of kidneys available for transplant remains extremely limited. To reach that 80 percent target, we really need more patients to use home dialysis.

The racial and ethnic disparities in home dialysis use are striking, and reducing inequities in chronic kidney disease care has been one of my longstanding research interests. The NIH issued a request for applications for clinical trials to examine the feasibility and effects of interventions that integrate medical and social care to reduce health inequities, and I applied. My resulting R01 is a pilot study that will investigate whether integrating community health workers in nephrology care improves the rates of home dialysis use in our patient population in the Bronx.

What are some of the barriers to using home dialysis?

Patients living in neighborhoods with higher rates of poverty, lower levels of educational attainment, and substandard housing—key components of what is known in healthcare as the Social Deprivation Index—are less likely to go on home dialysis. There are also significant racial and ethnic disparities, with African American/Black and Hispanic/Latino patients being less likely to use home dialysis compared to White and Asian patients. Much of this disparity is due to structural and social barriers. If a patient is facing food or housing insecurity, they may be less engaged in their care. In the case of housing instability, patients may lack a suitable living environment to perform home dialysis.

How can community health workers help?

Community health workers (CHWs) are trained to bridge the gap between social care and medical care, connecting patients with community resources that can help them overcome social barriers to care. They can also provide crucial, often culturally concordant, peer support. We envision the CHWs in our study interacting with patients in the nephrology clinic, fully integrated into the healthcare team. At Montefiore, we have a strong track record of success with our Community Health Worker Institute, and the model we’re planning to evaluate in our study would be novel in how it incorporates CHWs into nephrology practice.

In addition to addressing unmet social needs, our goal is for the CHWs to facilitate peer education on the benefits of home dialysis and provide support and guidance on what it would be like to be a patient on home dialysis. Lived experience is key! The ideal person for this role is someone who has been on home dialysis themselves or has experience as a care-partner for someone on home dialysis. Our hope is that this peer education and support will empower more patients to choose home dialysis.

What are the benefits of home dialysis?

There is a lot more flexibility and autonomy with home dialysis compared to having to go to a dialysis center for several hours, several times a week. Patients report greatly improved quality of life when receiving their treatments in the comforts of their home. While there is no difference in mortality rates between home vs. in-center dialysis, studies indicate better blood pressure control and preservation of kidney function with home dialysis. From a health system perspective, home dialysis is more cost effective, ultimately helping everyone by better managing limited healthcare resources and budgets on national scale.

I can see how having dialysis at home could be intimidating for some patients. What types of support do they receive?

There are definite benefits to home dialysis, but patients do have to be willing to take on some responsibilities themselves. Our role is to motivate and empower them, reassuring them that they’re capable. Patients often ask, “what if I mess up?” It might seem scary and daunting, but we reassure them they are not alone and will receive ample training and support.

Patients who opt for home dialysis are referred to special programs where they will receive in-depth education and training on the different home options. Members of the home dialysis team, including nurses, dietitians, and social workers, collaborate to ensure that patients receive comprehensive support tailored to their individual needs. In general, patients receive training for as long as they need to feel confident and comfortable before doing it on their own. A nurse is available 24/7 for any issues, and patients continue to see the home dialysis team and their nephrology provider regularly for follow-up.

We also encourage patients on home dialysis to have a care partner when possible. Patients without a care partner can still do it, but ideally, there is someone there to lend support.

Are there other obstacles to getting more patients to do their dialysis at home?

In the United States, in-center dialysis has been the norm. Providers don't receive as much training or have as much experience with home dialysis. As a provider, you're likely to recommend what you feel more comfortable with. Our patients rely on us—if we tell them, “Home dialysis would be a great option for you,” they are more likely to consider it. However many providers are not recommending it to their patients.

How does this study fit in with your other ongoing research?

I had an NIH K award that looked at using an interdisciplinary care model to improve outcomes for patients with advanced kidney disease, particularly during the transition to end-stage kidney disease, where patients may need either a transplant or dialysis. My R01 is a direct follow-up because, while we saw good results overall for the interdisciplinary care, we didn't really increase home dialysis utilization. We hope that adding community health workers will make a meaningful difference.

All this aligns with my overall research goal, which is to reduce health inequities in kidney disease. I’m also the site primary investigator at Montefiore for a study that will use interventions for both patients and providers to target the negative impacts of structural racism in kidney disease, specifically racial and ethnic disparities in kidney transplantation. The goal of the study is to improve the number of Black and Hispanic patients with advanced or end-stage kidney disease who complete kidney transplant evaluation and become activated on the kidney transplant list.

There are significant disparities in kidney transplant access and there is a lot we can do on the provider side. One of the things we are trying to promote is the use of less stigmatizing language, which may lead to unfair perceptions about patients and their ability to do well if they were transplanted. The sobering fact is that Black and Hispanic individuals are disproportionately affected by kidney disease; yet they're less likely to be transplanted and less likely to receive options like home dialysis. So, there is a lot of work to be done.