Comparing Three Ways to Improve Quality of Life for Patients with Kidney Disease and Their Caregivers

Results Summary

What was the research about? In chronic kidney disease, or CKD, the kidneys don't work well to remove waste from the blood. Some people with CKD have kidney failure and need dialysis or a kidney transplant. Learning about how CKD affects people can help patients cope with the illness. It can also help caregivers who may feel stressed as they help patients with daily tasks. In this study, the research team compared three ways to support patients with CKD and caregivers: A book about CKD's causes and treatments plus six months of in-person mentoring from a peer The book and six months of online peer mentoring The book alone Peers were patients with CKD or caregivers who received training to help people deal with the condition. What were the results? After 18 months, compared with patients who received the book alone, patients who had in-person mentoring had better scores in kidney disease symptoms. Compared with patients who received the book alone, patients who had online mentoring had better scores in kidney disease symptoms, physical health, and kidney disease burden in their lives. They were also more involved in their health care. Caregivers didn't differ among the three groups in how much burden they felt. Who was in the study? The study included 155 people with severe CKD and 86 caregivers of people with CKD. Among patients, 48 percent were white, 41 percent were black, 8 percent were multiracial or another race, and 3 percent were Asian; 11 percent were Hispanic. The average age was 53, and 57 percent were men. Among caregivers, 47 percent were white, 43 percent were black, 6 percent were multiracial or another race, 4 percent were Asian, and 1 percent were American Indian or Alaska Native; 9 percent were Hispanic. The average age was 54, and 64 percent were women. What did the research team do? The research team assigned patients and caregivers to one of the three groups by chance. In all groups, people received the CKD book. In one group, patients and caregivers also had monthly one-on-one meetings and weekly calls with a peer mentor. In the second group, patients and caregivers used a website to check in with a mentor and ask questions. The third group only received the book and instructions to ask a doctor or nurse any questions. Patients and caregivers took surveys at the start of the study and again 12 and 18 months later. Patients, caregivers, doctors, nurses, and social workers helped design the book and plan and conduct the study. What were the limits of the study? The study only included people in Pennsylvania. Results may differ in other places. Future studies could test these ways to support people with CKD in other places. Researchers can also look at ways to support people with earlier stages of CKD. How can people use the results? Clinics can use the results of the study when planning ways to support patients with CKD and their caregivers.