Increasing Patient Activation in American Indian Families with or at Risk for Chronic Kidney Disease

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What was the research about?

In chronic kidney disease, or CKD, the kidneys don’t work well to remove waste from the blood. CKD can lead to kidney failure and even death. American Indian people have high rates of CKD.

Behaviors to manage health and health care may slow the progress of CKD. Increasing patients’ activation, or their knowledge, skills, and confidence about these behaviors, may be one way to improve kidney health.

In this study, the research team compared two approaches to increase patient activation and improve kidney health among American Indian adults with or at risk for CKD:

• CKD education at home plus usual care. Community health representatives, or CHRs, met with patients at home or by phone two times per month. Topics discussed in meetings included staying active, making healthy food choices, problem solving, and weight loss. CHRs also held group sessions every three months to build peer support. In these sessions, people did social activities, like cooking traditional food or playing bingo. Patients also received usual care.
• Usual care alone. Patients received usual care at one of four Indian Health Service or tribally operated health clinics in New Mexico. They also attended a class on diabetes taught by CHRs.

What were the results?

The research team surveyed patients at the start of the study and again 6 and 12 months later. But many of the surveys took place during the COVID-19 pandemic, so only 26 percent of the patients completed all three surveys.

For patients who completed either the 6- or the 12-month survey, those who received CKD education plus usual care and patients who received usual care alone didn’t differ in how much patient activation and kidney health improved.

Compared with patients who received usual care alone, patients who received CKD education plus usual care were:

• Four times more likely to complete the 6-month survey
• Three times more likely to complete all the surveys

Who was in the study?

The study included 186 American Indian people ages 21–80 who had or were at risk for CKD caused by type 2 diabetes. The average age was 57, and 57 percent were women. Patients in the study could be part of the same household.

What did the research team do?

The research team assigned households by chance to receive CKD education plus usual care or usual care alone. Besides completing surveys, patients who remained in the study had tests to monitor diabetes and kidney health.

Patients with CKD caused by diabetes, tribal leaders, doctors, and staff from the Indian Health Service provided input on the study.

What were the limits of the study?

Due to social distancing during the pandemic, patients received CKD education online or in print instead of at home. Fewer people completed the study, so it was hard to find differences between approaches.

Future studies could continue to explore ways to provide CKD education to American Indian people with and at risk for CKD.

How can people use the results?

Clinics can use these results when considering how to support American Indian patients in managing their CKD.

Objective

To compare the effectiveness of a home-based educational intervention plus usual care versus usual care alone in improving patient activation and health outcomes among American Indian people with, or at risk for, diabetic chronic kidney disease (CKD)

Study Design

This randomized controlled trial compared the effectiveness of home- and telephone-based CKD family education plus usual care versus usual care alone in improving patient activation and health outcomes among American Indian families.

Researchers randomly assigned participants as households to receive CKD education plus usual care or usual care alone.

In CKD education, trained community members, called community health representatives (CHRs), conducted biweekly home or telephone visits. Topics included exercise, a healthy diet, blood pressure control, and problem solving. CHRs also led quarterly group activities, like cooking traditional food and playing bingo, to promote group cohesion and peer support. Participants received usual care at one of four Indian Health Service or tribally operated clinics in New Mexico, including a class on diabetes taught by CHRs.

The study included 186 people with or at risk for CKD caused by type 2 diabetes. The average age was 57, and 57% were female.

At baseline and 6 and 12 months later, researchers administered surveys about patient activation and did lab tests to monitor diabetes and kidney health.

American Indian people with or at risk for CKD, tribal leaders, doctors, and representatives from the Indian Health Service provided input throughout the study.

Results

Only 26% of participants completed all three surveys. At 6 months, 53 participants who received the intervention and 23 who received usual care completed surveys; at 12 months, 37 who received the intervention and 35 who received usual care completed surveys. Among those who completed either the 6- or 12-month survey, patient activation scores and clinical markers of CKD did not differ significantly between participants who received CKD education plus usual care and those who received usual care alone.

Compared with those who received usual care alone, participants who received CKD education plus usual care were:

• Four times more likely to complete the six-month assessment (95% confidence interval [CI]: 2.1, 7.9).
• About three times more likely to complete all three study assessments (95% CI: 1.4, 5.7).

Limitations

The study occurred during the COVID-19 pandemic. Some participants received information online or in print instead of during home visits because of pandemic-related impacts on CHR staffing or social distancing mandates. The small number of completed surveys across time points limited the ability to detect differences between groups.

Conclusions and Relevance

The study could not draw conclusions about the effectiveness of the CKD education intervention. However, participants who received CKD education plus usual care were more likely to remain in the study than those who received usual care alone, indicating American Indian families may be interested in receiving this type of intervention.

Future Research Needs

Future studies could continue to explore ways to provide CKD education at home to American Indian people with and at risk for diabetic CKD.

Effect of COVID-19 Pandemic on Healthcare Access, Anxiety, and Health-Related Behaviors among American Indian People with or at Risk for Diabetes or Chronic Kidney Disease

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