Implementation of a Peer Support Initiative for Kidney Transplant Recipients and Living Kidney Donors: A Program Report on the Transplant Ambassador Program
Susan Q. McKenzie, Kyla L. Naylor, Seychelle Yohanna, Jamal El Ali, Courtney Gibson, Fiona Gilfillan, Barb Longo, Christine Pisapia, Marian Reich, Mike Santavy, Amit X. Garg,Purpose of program
The Transplant Ambassador Program (TAP) is a patient-led, volunteer-driven support program that connects patients with kidney failure and potential living kidney donors to kidney transplant recipients and living kidney donors. TAP was developed to address a peer support gap identified by patients, by providing emotional support, practical guidance, and one-on-one conversations.
Sources of information
Lived experience of patients with kidney failure (e.g., kidney transplant recipients) and living kidney donors, information from existing peer support programs, input from individuals working in advanced chronic kidney disease (CKD) and dialysis clinics (e.g., nephrologists and nurses), and input from provincial transplant and kidney care organizations.
Methods
TAP was developed primarily by patients (i.e., kidney transplant recipients and living kidney donors), in partnership with researchers and kidney health care professionals. Transplant ambassador volunteers lead and run the program, including developing and delivering training to transplant ambassadors. Implementation of TAP began in November 2017 at half of the 27 CKD programs in Ontario, Canada, as part of a multicomponent cluster-randomized clinical trial.
Key findings
TAP has been operating for over eight years, expanding to all of Ontario’s CKD programs and to Atlantic Canada, with over 200 active transplant ambassadors. Since its launch, TAP has logged over 10,000 conversations with patients and potential donors and facilitated 25 educational webinars on kidney transplantation.
Limitations
Most patient referrals to TAP are initiated by healthcare professionals, who connect patients to the program. In some hospitals, low referral rates have resulted in transplant ambassadors stepping away due to a lack of work.
Implications
TAP demonstrates that patients can scale a volunteer-run, peer support model provincially and nationally. Patient volunteers have led this program and embedded it into kidney care, with support from provincial organizations, reaching many patients with CKD and potential living kidney donors.