Pilot Study to Create Automated Referral Process for Kidney Transplants

The process could improve access and equity for patients with end-stage kidney disease

In 2021, Cleveland Clinic performed 298 kidney transplants, up nearly 20% from the previous year. While the health system is the largest program in its region receiving referrals from Northeast Ohio and throughout the world, providers in the Glickman Urological & Kidney Institute strive to increase access to kidney transplant and, ultimately, improve outcomes for patients with kidney failure.

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“We believe the best treatment modality for patients with kidney failure is transplantation,” says Anne Huml, MD, a nephrologist in the Urological & Kidney Institute. “Identifying patients early offers them the best opportunity to be evaluated for kidney transplant.”

Dr. Huml and Jesse Schold, PhD, a researcher in Cleveland Clinic’s Department of Quantitative Health Sciences, received a Caregiver Catalyst Grant from Cleveland Clinic’s Philanthropy Institute to develop an opt-out intervention for kidney transplant referral to improve equity, promote timely evaluations, ascertain key barriers for evaluation and measure patient and provider perspectives on the process.

“The urgency by which patient identification and evaluation processes typically happen in practice is not always representative of what’s in the patient’s best interest,” says Dr. Schold. “We think that making these processes more efficient will improve the overall education and health outcomes.”

Streamlining referrals, empowering patients

Nearly 786,000 people in the U.S. are living with end-stage kidney disease, according to the National Institute of Diabetes and Digestive and Kidney Diseases. However, only 29% of those receive a transplant. To receive a transplant, patients must be referred to a transplant center and undergo evaluation, including an initial intake visit, medical and psychological workup, and determination of waiting list candidacy.

Complexity in these steps leads to disparities. Dr. Schold led a study showing that disparities exist in placement on the waiting list among populations of lower socioeconomic status and certain racial and ethnic groups, even among those in the top 20% for Estimated Post-Transplant Survival based on the national kidney allocation system (KAS).

“A project like ours can serve to lessen some of those disparities,” says Dr. Huml.

The aim of the 12-month pilot study is two-fold:

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1. Develop and automate electronic referrals for transplant evaluation into the electronic health record for patients at chronic kidney disease centers.

2. Empower patients by providing an outline of the transplant evaluation process and what to expect at center visits.

Tracking patients to pinpoint barriers

Drs. Huml and Schold plan to leverage an electronic platform to automate referrals from Cleveland Clinic chronic kidney disease clinics at various locations for patients who meet basic eligibility requirements, including a certain level of kidney function and no glaring contraindications to kidney transplant.

“By automating initial referrals and making this an opt-out rather than an opt-in process, we hope to provide more equitable access and attenuate some of the disparities and inefficiencies that are in this very complex process to provide more efficient care, even if some patients are not ultimately viable for transplant,” says Dr. Schold.

The automated system will also track the progress of patients throughout the multi-step evaluation process.

“Oftentimes, patients drop off before being successfully evaluated,” says Dr. Huml. “We plan to devise interventions to help patients through this process based on barriers we find.” To discern barriers, Dr. Huml and Dr. Schold envision creating a dashboard of steps in the process and getting patient feedback at each step.

“Unless we understand the very specific, granular steps where delays exist, it’s hard to create interventions for those barriers,” says Dr. Schold.

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Data collected will include the frequency of referrals triggered for patients, acceptance by providers, appointments scheduled, visits to the transplant center and transplant candidacy of those referred.

Educating patients

The second component of the project is patient education. “We hope to educate patients on what it means to get a kidney transplant referral and what to expect at their first visit to the transplant center,” says Dr. Huml.

The process can be lengthy, particularly if patients haven’t had the required medical and psychological workups prior to visiting the transplant center. Therefore, it’s important to involve patients in discussions early and ensure they understand the expectations and terminology.

Dr. Huml and Dr. Schold will design questionnaires to determine patients’ knowledge about kidney transplant before and after the intervention. They also plan to interview providers at the conclusion of the project to determine acceptability of the automated referral system.

Cleveland Clinic is well-suited for this study, which aims to enroll approximately 100 patients.

“We have a very large transplant population and an exceptional team of providers who value high quality of care,” says Dr. Schold. “I think there will be a lot of lessons learned not just for our program, but also ones to share with the transplant community.”