Announcing the launch of the Listening & Resource Center (KTLRC) & bilingual educational guide

Rachyl Pines COVID-19, Transplant News

By Emily H. Wood, Research Associate

The Transplant Research and Education Center (TREC), has launched the COVID-19 Kidney / Transplant Listening & Resource Center (KTLRC). The KTLRC is a toll-free call center that allows patients, their loved ones, and caregivers to connect with our experienced staff to share their questions, concerns, and receive answers, education, and referrals for additional resources.

The KTLRC can be reached at:

1-800-830-0484

trec@mednet.ucla.edu

We created the KTLRC in direct response to the unique and unmet needs of the dialysis and organ transplant community during the COVID-19 pandemic. Dialysis patients and the transplant community are vulnerable populations because they have chronic diseases, comorbidities, and immunosuppressed statuses that make them more susceptible to COVID-19.  These patients face never-before-encountered challenges and risks now associated with preventing or being treated for COVID-19 and following their existing care plans, including attending medical visits, routine dialysis appointments, transplant evaluation, or regular lab tests post-transplant.

At the start of the pandemic, Dr. Waterman and TREC received calls and emails from kidney patients, living donors, and coordinators and clinicians who recognized that the guidance and recommendations put out by major agencies like the CDC and WHO did not fully address the unique concerns of our community. While AST did provide guidance on its website, it was geared to a provider audience. Immediately we began working with a patient panel to identify important questions and gaps in the available information. Over the course of 6 weeks, we produced a comprehensive educational guide that was health literate, available in English and Spanish, and vetted by clinical experts at UCLA. Doing everything you can during COVID-19: A Kidney & Transplant Patient Guide is available for anyone who needs it on our website.

Yet we felt that the education on our website was not enough. Transplant centers were quickly making changes to keep patients safe, temporary inactivations were approved, living donation and paired exchange programs went on pause at many centers, and kidney patients faced new complexities when deciding about whether or not to accept an organ offer in the midst of a pandemic. We wanted to do more to support our kidney and transplant community during a scary and uncertain time, so we created the KTLRC as a way to connect directly with patients and caregivers, to provide information, a place to share and be heard, and referral to helpful resources.

Patients and caregivers from anywhere around the country can call the KTLRC. We have also partnered with the Connie Frank Kidney Transplant Center at UCLA to ensure that all UCLA kidney transplant patients are invited to call the Listening Center to have their questions answered, share their experiences, and receive support. Calls are answered by staff trained in motivational interviewing and empathic communication, who are ready to answer questions about COVID-19 and transplant. They will also provide educational materials and referrals to additional resources, including mental health and financial resources. The KTLRC is staffed between the hours of 7am and 6pm PST Monday – Friday. Staff answer all voicemails left at the Center during the next business day.

Lizeth Ambriz, manager of the KTLRC, said of the center, “It provides patients with an opportunity to be heard in a time where such opportunities may be limited due to social distancing or other barriers. It also provides them with a centralized location to receive education tailored to their experiences as kidney patients or caregivers of kidney patients.”

Providing support and education to the kidney and transplant community has always been central to TREC’s mission. Grace Kim, a research associate and educator answering calls to the KTLRC, explained that she wants individuals who call the center to end their calls feeling “understood and confident when thinking about navigating their care.”

The KTLRC is part of a UCLA IRB-approved study IRB#20-000863 that will support the continued improvement of educational and telemedicine resources for kidney and transplant by making it responsive to the needs and concerns that they share. Based on calls to the KTLRC, TREC will determine what common questions, fears, and challenges, that dialysis, and transplant patients and their caregivers are having during the time of COVID-19, as well as what types of assistance are most helpful, and how they would prefer educational information to be optimally delivered.

The COVID-19 Kidney / Transplant Listening & Resource Center (KTLRC) provides patients with access to expert support, someone to listen meaningfully to their experiences navigating care at this time, answers to their unique medical concerns, and referral to a comprehensive educational guide, including mental health and financial resources. If you have questions or would like to share about your experience navigating care during COVID-19, we hope you will give us a call!