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.

Final Research Report

View this project's final research report.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

The reviewers expressed concern that the minimally clinically important difference (MCID) the researchers chose was too high, and they suggested the researchers conduct additional analyses based on a smaller recommended MCID. The researchers responded that they used MCID for sample size calculation and not for statistical analysis, so they concluded that new analyses were beyond the scope of this project.
The reviewers asked for a review of assumptions and calculations to make sure that the project’s high dropout rate did not compromise the validity of the study’s findings. The researchers agreed that loss to follow-up was higher than expected but said they used intention-to-treat analysis and complete case analysis to minimize potential bias. The researchers noted that the highest loss to follow-up occurred in the control group, reducing concern that the burden of intervention was the main reason people dropped out. Loss to follow-up rates were similar across the two intervention groups.
The reviewers suggested they would like to have seen a broader set of outcomes assessed, especially clinical outcomes. The researchers explained that they focused on patient-reported outcomes in this report but that clinical outcomes such as fatigue and cognition would be important to consider in future studies.

Conflict of Interest Disclosures

Project Information

Nasrollah Ghahramani, MD, MS
Pennsylvania State University Hershey Medical Center
$1,829,407
10.25302/10.2020.CDR.131007055
Improving Patient Quality of Life and Caregiver Burden by a Peer-Led Mentoring Program for Patients with Chronic Kidney Disease and Their Caregivers

Key Dates

July 2014
April 2020
2014
2020

Study Registration Information

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Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
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Last updated: January 25, 2023