Prof. Maya Clark-Cutaia unlocks kidney health disparities
March 01, 2020
Prof. Maya Clark-Cutaia is a symptom scientist who studies disparities in chronic illness. Her work is driven, in part, by a curiosity to unlock the right daily sodium limit for dialysis patients — and to find better care delivery models for her patient population, who are mostly African American.
In February, Clark-Cutaia received a pilot award from the Center for Improving Care Delivery for the Aging to examine self-assessment among dialysis patients. In January, she was named a Multiple Chronic Conditions Scholar to pursue cross-cutting research on multiple chronic conditions affecting older adults. Last year, she also received the a “40 and Under Award” from the National Black Nurses Association for demonstrated excellence and innovation in her practice setting.
What does your research focus on?
I work mainly with chronic kidney disease, which happens to be one of these disease processes that is highly associated with diabetes and high blood pressure. In all three, minorities are overrepresented, so the majority of my patients are African American. Kidney patients get admitted 2–3 times more often than the average Medicaid patient. It’s probably some combination of genetic predisposition, lack of knowledge about their disease process and how to take care of themselves, and lack of access to care and resources. Each thing stacks upon the other and puts them at greater risk of doing poorly.
Most of my research focuses on educating patients so that they understand the decisions they are making and how it impacts their quality of life or the length of their life.
In particular, I’ve been looking at how sodium intake impacts the amount of fluid that patients gain between dialysis—and how that translates into the symptoms they experience. The thought would be that if they gained less water weight between dialysis sessions, then they’d be more likely to have less fluid pulled off and therefore be less uncomfortable during dialysis and after.
What motivated you to take a closer look at dietary recommendations for dialysis patients?
We’re telling patients to restrict sodium, but there’s no empirical evidence to suggest that it works. We know that it works in hypertensive patients, but we don’t know what the prescription is for a dialysis patient.
When I did my post-doc at Penn, I went looking for this sodium restriction, asking, why are we telling people that this is what patients on dialysis should eat? But I couldn’t find it. From my pilot data, we know there is something about 2,000 mg of sodium a day that seems to reduce fluid accumulation between dialysis sessions. But it’s still hard to do.
What are some of the challenges of following this strict diet?
The patients I work with are perfect examples of why dialysis patients tend to do poorly. They are on dialysis 3–4 hours a day, three times a week. Many are unable to work because they’re on dialysis so much of the time, and when they’re not on dialysis, they don’t feel well enough to work. They don’t feel well enough to cook.
The American Heart Association recommends limiting sodium to 1,500 mg per day. But nobody can do that on a fixed income. It’s almost impossible for us to eat the way that we’re supposed to eat with a certain amount of income and means, but these are typically people who live in low socioeconomic neighborhoods that don’t have immediate access to grocery stores . . . There are fast food restaurants right next to dialysis centers, as well. They are quick and, most importantly, convenient.
Your research is about finding ways to support patients with the knowledge and resources to succeed. What does that look like?
I’m developing a grant to study sodium requirements. Philadelphia has an organization called Metropolitan Areas Neighborhood Nutrition Alliance (MANNA) that delivers medically tailored meals for free through patients’ insurance. And it’s a completely volunteer-based program. They provide 2,000 mg of sodium, which is right between the recommendations from the American Heart Association and the National Kidney Foundation . . . They do it for heart failure patients. Insurance covers it for some patients, and it is prescribed by a provider.
And if [the 2,000 mg limit] really does work, how do I make it accessible in a community that doesn’t have the resources to do it. What things can we do that impact that community without putting more constraints and responsibilities on them, because I can’t imagine doing all the appointments, the dialysis, the medications that they do. They have families. It’s a lot.
Did you start off working on health disparities?
I’m an anomaly. I grew up in Germany, as an army brat. I was the lone Black kid for as long as I could remember. . . Then I went to Penn. In class we'd talk about the Tuskegee Study, and people would turn around and look at me and ask, “How do you feel about this?” Well, I don’t know. I can’t speak for a whole population of people. I distanced myself from the disparity work. I didn’t want to deal with it.
And then my dad had prostate cancer, like many African American men do. He was diagnosed with diabetes and hypertension. My mom was diagnosed with hypertension . . . My dad’s brothers all had heart attacks, including him, before they were 41. Three of them passed away from heart attacks. The more that I started to be concerned with my family’s health, I thought, okay, there really is something to health disparities. I have to stop personalizing and internalizing what people don’t know, and I need to start educating people and myself.
How do health disparities inform your research?
I went to Pittsburgh to get my PhD. One day when I was sitting in class, a professor came in and told us about building an app for dietary restrictions. So I raised my hand and asked her, “Are you taking into consideration that not all people eat the same?” And she said, “No.” So I said, “My parents are very southern. There’s a lot of sodium in what we eat. So, how can you expect that from people if you don’t pay attention to it or acknowledge it?”
That’s how my interest started, because it’s bigger than me telling a patient not to do it. It’s about meeting patients where they are and having justification for it.
What else could improve your patients’ quality of life?
The ideal situation would be transplant. But minority patients don’t typically sign up for transplantation. And organ procurement is such that it takes years to get an organ anyway. There is a lot of research that suggests that it is related to lack of trust, lack of knowledge, or being poorly informed to make a decision. There’s some religiosity behind it, especially Black patients can feel like they should die with what God brought them with. It’s a conscious decision. But there’s also a large population who don’t understand what that means for them.
There’s some research coming out now that demonstrates that it’s not even really being discussed with them.
How do you think it affects your patients that you yourself are a person of color? How do you think it affects how they understand their disease?
They are typically more receptive to me. They feel that I am there to be the best advocate for them that I can be, that I truly have their best interest at heart. It also allows me to relate to them in a way, because I also have the same risks. I have high blood pressure risk in my family. . . and diabetes risk . . . so we can bond on that level without even knowing each other . . . We talk about their families, things that are going on . . .
But it also really makes me want to get an answer for them. Because that could be my uncle, my brother, my mom, my cousin. So I’m a little more invested, which I think—I hope!—comes through to my patients.