Project Summary

Patients with advanced chronic kidney disease (CKD) are challenged with the effects of kidney failure on their physical and mental health. Although African Americans experience three times higher rates of kidney failure, they are less likely to receive a transplant or choose home dialysis.

Evidence suggests disparities can be reduced through patient engagement and education. Peer mentoring programs can connect patients to the experiences of similarly situated patients leading to a mutually supportive and engaged community of patients empowered with coping skills to deal with the challenges of CKD and to make optimal renal replacement choices. AAKP’s effective outreach models and patient-volunteer Ambassador program are well equipped to engage vulnerable CKD/end stage renal disease (ESRD) populations.

The objective of the project is to increase patient engagement and improve CKD patients’ well-being by exposing them to proven coping strategies for living well with CKD and effective strategies for choosing optimal renal replacement options.

The project team will recruit and train more volunteers in the Southeast (SE) region for the AAKP Ambassador program from Emory’s and Kaiser Permanente Georgia’s CKD/ESRD programs. Ambassadors will deploy to local clinics to engage peers through one-on-one interactions, classes, and group visits. Patient-led panels will refine dissemination strategies and enhance educational resources and help determine patient preferences as to how information on coping strategies and renal replacement options should be disseminated. Outreach to vulnerable and unengaged patients will include recruitment of African Americans for the patient-led panels and the Ambassador program as well as those who have been referred to education classes/or transplant evaluations but did not attend.

Projected outcomes are to increase the number of trained Ambassadors; increase the number of patients engaged in patient advisory panels; enhance the quality of educational resources to include effective coping strategies and patient values/preferences for dialysis/transplant options; increase the percentage of CKD patients who are engaged with an Ambassador; increase the percentage of vulnerable patients that receive education; and improve knowledge of renal replacement therapy choices and coping strategies among African-American CKD/ESRD patients. Short-term outputs will include developing manuscripts on the process evaluation/effects of the aims, as well as on the success of AAKP’s outreach efforts. The project will develop a toolkit for outreach strategies that can be replicated in clinics across the United States to help engage hard-to-reach populations who would otherwise be excluded from such evidence-based educational interventions.

Patients targeted are those with advanced CKD-4-5, ESRD, family members, high-risk individuals who have declined previous educational programs, and patients with a history of noncompliance or who have refused transplant referral. Patients will be engaged personally and through social media platforms. Stakeholders will include AAKP Ambassadors, patients and nephrologists, nurses, and social workers from Emory and Kaiser Permanente Georgia. While the project will focus on the SE region, the team will include additional stakeholders such as American Society of Nephrology, Renal Physicians Association, and NKDEP to inform the processes from a national perspective. Stakeholders will be asked to provide feedback on the approach, implementation, and dissemination efforts to ensure success, sustainability, and broad applicability.

Main project collaborators include AAKP, Emory, Kaiser Permanente Georgia, ESRD Network 6, and Dialysis Clinic, Inc.

Project Information

Janice Lea, MD
American Association of Kidney Patients
$296,205

Key Dates

March 2022
2019

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Last updated: March 4, 2022