Home-Based Care for Chronic Kidney Disease

For one year, trained community health representatives—members of the tribe who speak Zuni—visited patients with kidney disease every second week. They provided education about healthy lifestyles, support for taking medicines, and data collection. (For more detail, see our original feature below.) When compared with patients who received usual care at a local Indian Health Service clinic, the patients who had those home visits were more inclined to take action to improve their own health. They also lost more weight and showed more improvement in blood markers of both kidney disease and diabetes.

“With a little money from PCORI, we did beautiful things,” Shah says. “The patients started taking care of themselves. Because of that, you see improvement in the clinical picture.”

Education Tailored to Individuals

The home visits provided patients with educational materials selected according to the individuals’ specific interests. “If they told us, ‘Let’s talk about salt in the diet,’ we provided that information,” Shah says. The community health representatives also drew blood and reported results right in the patients’ homes. “You are able to see that your A1C, a diabetes marker, is still 10. Then we tell you that your goal is to bring it under 7, and that the medicine you’re taking should help, along with your lifestyle modifications,” he says.

In fact, in the group that received home visits, A1C levels dropped by an average of 0.5 over the year, while the group that did not receive home visits saw a small increase in A1C. The home visit group lost an average of 1.2 points in body mass index, a measure of weight proportional to height, compared with a decrease of only 0.1 in the group that did not get the visits. Similarly, a measure of how involved patients are in their own health care improved only in the group who received home visits.

One hundred patients with kidney disease participated in the study. Half received home visits and half received usual care in a clinic. Shah and his colleagues are preparing to publish their results in peer-reviewed journals.

Expanding the Research to Other Tribes

In a second PCORI-funded project, Shah is now expanding the work to 240 people in four additional Native American tribes in New Mexico, which also have high rates of diabetes. “No one has even looked at kidney disease in these tribes,” Shah says.

Shah and his team have changed their design for the larger study in response to community feedback. A newly elected Zuni leader was concerned that some people in the original study did not receive home visits. In the new study, all of the patients receive the home visits—but to allow for a comparison, a randomly chosen half of them have a yearlong delay before the visits begin.

Shah is also seeking funding to do a similar study in the town Guadalupe, Arizona, which has a population of Yaqui American Indians and Hispanics. With his original PCORI funding, Shah conducted a survey in Guadalupe and found that 72 percent of the people he met by chance had diabetes. “The idea is not to just focus on Native Americans,” he says.

ORIGINAL FEATURE (JULY 2014)

This scenic valley 150 miles west of Albuquerque, home to the Zuni people for thousands of years, is Ground Zero in an epidemic of chronic kidney disease. The prevalence of dialysis-requiring kidney disease, adjusted for age and sex, is higher among the Zuni than in any other ethnic group in the United States—roughly 20 times as high as in European Americans and 5.6 times as high as in the overall American Indian population.

About 11,000 people––95 percent of the entire Zuni population––live in the Zuni Pueblo. Traditionally farmers, today most Zuni adults earn a living making jewelry. Pueblo residents are predominantly young; 90 percent of the population is under age 45, and the median age is 26 years. Many residents speak Zuni as their first language.

A complex mix of factors including sedentary lifestyles, poverty, a diet heavy in processed foods, and skepticism of Western medicine has contributed to intertwined epidemics of kidney disease, type 2 diabetes, and obesity among the Zuni, says Vallabh O. Shah, PhD, of the University of New Mexico Health Sciences Center (UNMHSC). Obesity increases risk for type 2 diabetes, and kidney disease is a common complication of diabetes.

For 16 years, Shah and his colleagues have worked in partnership with the Zuni people on a series of studies aimed at addressing these epidemics. Every other Friday, he drives 300 miles round trip between Albuquerque and the Zuni Pueblo for study-related meetings and to assist with diabetes management training sessions and exercise programs for young Pueblo residents.

Now, a PCORI-supported, community-based collaborative research project aims to bring a new approach to care for chronic kidney disease. The new strategy is intended to delay or reduce the number of people whose condition progresses to end-stage kidney disease, when they need dialysis. It will test a program in which indigenous, Zuni-speaking community health workers bring care into patients’ homes, and patients receive intensive support to encourage adherence to medical treatment and healthy lifestyle changes.

Focus groups and experience recruiting participants for earlier studies identified a strong preference among the Zuni people for health care delivered at home, says Shah. The project will compare participants receiving the home-based program with those receiving the usual care provided by physicians based at the Indian Health Service (IHS) clinic located a couple of miles outside the Pueblo.

Heavy Toll on the Community

Few Zuni families are untouched by kidney disease and diabetes. Bernadette Panteah, who serves on the tribal panel that is overseeing the project, sees the toll of these diseases firsthand. Two of her grandparents died of end-stage kidney disease, and her father and brother both have diabetes. In her job as director of the federally funded Zuni Education and Career Development Center, she observes the diseases’ effects on the community. “Many of the people we serve are unable to work because of their health problems,” she says.

Shah’s research team, which includes three Zuni health workers, is using different recruitment methods, including canvassing at the community meetings and health fairs and putting notices on radio. The team will randomly assign 120 participants—aged 18 years or older who have chronic kidney disease but are not on dialysis—to either the novel home-based intervention or usual care.

Participants assigned to home care will receive:

• Monthly home visits from a community health worker
• Quarterly home visits and monthly telemedicine consultations with a UNMHSC physician
• Medications for high blood pressure, diabetes, or kidney disease, as prescribed by their IHS primary care physician
• A dietary assessment by a UNMHSC dietitian, as well as tips from the community health worker on healthy cooking and food shopping
• An individualized weight-loss plan for participants who are 20 percent or more above their ideal body weight
• An individualized home exercise program prepared by a certified Zuni fitness trainer, plus transportation to attend three weekly supervised exercise sessions at the Zuni Wellness Center
• Weekly text messages from the community health worker, offering healthy-lifestyle tips and checking on their adherence to their medication, diet, and exercise program
• If necessary, loan of a cell phone with texting capability during the one-year study period

Those assigned to usual care will receive three home visits by a community health worker––at enrollment, after six months, and after one year––to measure their blood pressure, weight, blood sugar levels, and kidney function. Otherwise, they will be advised to seek care from their physician at the IHS clinic. 

Model for Care Delivery in Health-Disparity Populations

The primary purpose of this project is to assess the safety and feasibility of a larger follow-up study, says Shah.

“We will compare adherence to medication and lifestyle interventions between the usual-care and home-care groups,” he says. “Our hypothesis is that adherence rates will be better in the home-care group.” Studies in other indigenous populations have demonstrated that, compared with conventional care for diabetes and chronic kidney disease, home-based care delivered by community health workers can improve blood pressure control and reduce heart and kidney damage.

Shah says, “We believe that if the home-based model for kidney care is successful, it will be readily translatable to other disenfranchised populations, provided that it is implemented in a culturally sensitive manner.” He adds that the project is also expected to generate valuable information about how to cost-effectively and sustainably initiate and maintain the substantial lifestyle changes necessary to slow the progression of kidney disease in a rural, minority population severely affected by health disparities.

The Tribal Advisory Panel (TAP) overseeing the project meets quarterly with Shah and his research colleagues to guide the research. The project also has a Steering Committee, which is responsible for scientific direction and resource allocation and includes tribal leadership, Zuni community health workers, and representatives from the IHS clinic and other health programs. Ground rules developed by the researchers and community partners spell out how decisions will be made, ownership of study data will be determined, study findings will be disseminated, and tribal participants’ confidentiality will be protected.

Serving on TAP has, Panteah adds, “been an opportunity for me to learn more about strategies to combat health risks and to understand what methods are truly effective and culturally relevant. The partnership also allows TAP members to be directly involved in collective efforts to minimize gaps in cultural understanding.”

Posted: July 31, 2014; Updated: March 10, 2017