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

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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. 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.

Objective

To test the effectiveness of an informational textbook with or without in-person or online peer mentoring in improving quality of life (QOL) for patients with chronic kidney disease (CKD) and reducing burden for caregivers

Study Design

This randomized controlled trial compared the effectiveness of in-person and online peer mentoring and textbook-based education on improving QOL and patient activation in patients with CKD and on decreasing burden for caregivers of patients with CKD.

All participants received a textbook about CKD and its causes and treatments. Researchers randomized participants to three groups. One group received in-person monthly visits and weekly calls with a trained peer mentor for six months. These mentors were people with CKD or caregivers of a person with CKD. The second group exchanged online messages with mentors and other participants for six months on a web discussion board about CKD. In the third group, participants received only the textbook with instructions to ask clinicians any questions.

The study included 155 people with CKD and 86 caregivers of people with CKD in Pennsylvania. Among patients, 48% were white, 41% were black, 8% were multiracial or another race, and 3% were Asian; 11% were Hispanic. The mean age was 53, and 57% were male. Among caregivers, 47% were white, 43% were black, 6% were multiracial or another race, and 4% were Asian; 9% were Hispanic. The mean age was 54, and 64% were female.

Participants completed surveys at baseline and 12 and 18 months after enrollment.

People with CKD, caregivers, nephrologists, primary care clinicians, social workers, and transplant coordinators helped plan and conduct the study.

Results

After 18 months, compared with patients who received the textbook only,

• Patients also receiving face-to-face mentoring had better scores in kidney disease symptoms (p=0.04).
• Patients who also had online peer mentoring had better scores in QOL as measured by kidney disease symptoms (p=0.003), kidney disease burden (p=0.04), and physical health (p=0.01). Activation scores for the online group were higher at 18 months than for the in-person group (p=0.02), and for the textbook-only group (p=0.01).

Patients in the online group also had higher patient activation scores at 18 months than at baseline (p=0.0001); the other groups did not have significant change at 18 months.

Groups did not differ significantly in effects of kidney disease or in mental health. The three groups did not differ significantly in change in caregiver burden at 18 months.

Limitations

The study included participants who lived in central Pennsylvania. Results may differ in other regions.

Conclusions and Relevance

Online peer mentoring was associated with improvements in patient QOL and patient activation for patients with CKD compared with textbook-only support. In-person peer mentoring was associated with improvements in CKD symptoms. The study found no differences in caregiver burden among groups.

Future Research Needs

Future research could test the effect of peer mentoring in other regions, in patients with earlier stages of CKD, or on other outcomes such as hospitalization.