Understanding kidney disease – from those who do

The National Kidney Foundation’s Peers program is a telephone-based peer support program offered throughout the U.S. It was developed to connect people living with chronic kidney disease, kidney failure, or a kidney transplant with another patient in a similar situation. Patients seeking support are connected via a toll-free phone system which protects their personal contact information. Since the program was launched in September 2011, NKF Peers has matched over 450 people in need of support. In October 2015, NKF expanded the program to provide support to living donors and those considering living donation.

How it works

Participants seeking support (mentees) are matched one-one with a trained peer mentor and are connected via phone. I assess interested participants, facilitate training, and provide oversight, following matched pairs throughout the program.

Training peer mentors

Peer mentors are volunteers who generously give their time and are willing to share their personal experience with kidney disease to help other patients. They have a range of experiences; NKF mentors take part in an extensive telephone-based training program which covers a range of topics such as self-awareness, loss and grief, confidentiality, empathy, active listening, and maintaining a healthy peer relationship. At the end of the training, mentors complete a final exercise which demonstrates their competence and mastery of skills necessary for becoming a peer mentor.

Tracking results

NKF provides follow up satisfaction surveys post-match, and we have found that 97% of those supported by a mentor would recommend NKF Peers to someone in a similar situation.

Additionally, to quantify levels of patient engagement, NKF utilizes the “Patient Activation Measure” (PAM), which is a validated survey that assesses participants’ knowledge, skills, and confidence for self-management. The PAM is given pre- and post-matching to mentees and mentors. Participants’ responses translate into a numerical score ranging from 0 to 100 which assesses a participant’s knowledge, skills, and confidence for self-management. For mentees, the average pre-participation PAM score is 53.4, which indicates that they have “begun to take actions” while the average score after being matched with a mentor is 65.96, which demonstrates a significant improvement from pre-scores and indicates they have “made most of the necessary behavior changes.”

What do patients say

“It was just wonderful to talk to my mentor…he was so reassuring and answered my questions in a way that a medical person cannot. Thank you so much for this amazing program!”

“I was diagnosed with CKD a little over a year ago, and quite honestly I must admit that at first I really didn’t know what this meant for me or for my future. I felt like this was my death sentence. I was so happy when I finally found the information for Peers. I cannot tell you enough what it has meant to have a mentor. She went above and beyond anything I could have ever expected. She was always so uplifting; answering all my questions and putting me at ease about living with this disease. She always listened to my concerns and questions and was a huge encouragement for me. I can honestly say that the times we spent talking were invaluable, being able to speak with someone that could relate to what I was going through, priceless. Thank you once again for having such a wonderful program available. I hope that one day I might be able to help someone who was feeling as lost as I was.”

“I am so grateful for this Peers program. I has been wonderful to talk to [my mentor] who has been through both the physical and mental aspects of kidney disease. She has been done wonders to keep my spirits high. I am so grateful for all her helpful little tips, especially as I prepare for the transplant.”

“In the very beginning when not knowing what is ahead, the NKF Peer support program really connects you with someone that has been through what one may have to go through or can prepare you step by step to calm your concerns. It is overwhelming to not know what to expect, this really helps no matter where you are in your journey.”

“Speaking with my mentor on a regular basis has been extremely helpful. She is very bright, helpful, and knowledgeable and speaks from experience. Since speaking with my mentor on a regular basis I have adopted a more positive attitude about being one of the millions of people living with CKD. I don’t feel as negative and grim as I once did. I still struggle with my many dietary challenges; however I have been utilizing many helpful resources including NKF. Having a positive role model has made incorporating the renal-diabetic dietary guidelines much easier. I don’t feel as alone coping with kidney disease as I once did. Overall I feel that having a NKF peer has been an extremely rewarding and positive experience in my life as a kidney patient.”

“I could let my hair down with my mentor. I could talk to a real person who had gone through the things I am facing - dialysis and transplant. There is nothing better than receiving support from a person who has (or is having) similar experiences to your own.”

“I thought my peer-answered questions were stupid, but I wanted an answer and she told me no question was stupid and gave me an answer.” -by Kelli Collins, MSW

Those interested in being a mentor or receiving support can contact the program at 855.653.7337 or nkfpeers@kidney.org, or contact Kelli Collins, MSW, directly at kelli.collins@kidney.org.