Waitlist Patients – A Forgotten Group


Waitlist Patients – A Forgotten Group

By: Koren Fay

Under pressure from CMS, UNOS and insurance companies, transplant centers often have a laser focus on the success of post-transplant patients. At the same time, the transplant center’s organizational leadership often focuses on new patient evaluations through financial and RVU incentive pressure. All the while, there are fewer resources to support the center’s daily work: less staff, less time, less IT resources available. Given increasing organ shortages, the volume of ill transplant candidates is ever-increasing. In the middle of our post-transplant and our evaluation patients are the waitlist patients, and when something has to give it seems this is the group that is passed over.

Recent statistics show us that about 40% of the national kidney waiting list is inactive; patients can spend over half of their total time on the waiting list in inactive status. At a time when organ supply is decreasing and the number of patients on the waiting list is increasing, it is more important than ever to keep a patient healthy and able to receive a transplant while they wait. But how does a transplant center do this when staffing and budgets are constrained? And how do you provide attention to the waitlisted patient without sacrificing the needs of the post-transplant patient and the evaluation patient?

It is possible, with just four key elements.

  1. Dedicated multidisciplinary team

No matter how large or small your center is, you can carve out a team to focus on the waitlist patients. This team can “share” some of its members such as dietary and social work with evaluation and post-transplant teams. But a coordinator or assistant is needed to focus completely on the wait list patients. This allows for more careful monitoring of conditions so patients can be re-activated as quickly as possible, and improved tracking to ensure testing is completed in a timely manner. This will prevent the need for late night ECHOs at the time of transplant or the cancellation of a transplant after the organ was accepted due to out-of-date cancer screening tests.

  1. Tracking tool to monitor completed testing and consultations

This can be in paper or electronic form. Ultimately, this information needs to end up in the patient’s medical record, but it can start anywhere. What is more important is that the tool is easy to use, simple to read, and includes all of the vital information about a patient, such as organ, blood type, time on the list, PRA, etc. This tool should list all of the patient’s testing, consultations and clearance requirements for remaining active on the list, so it should follow your selection criteria and waitlist management protocols. It needs to include when items were completed, when they are due again (a next review date) and what the recent results were. This tool needs to be reviewed continually to ensure that testing remains up to date and results are reviewed in a timely manner; it must remain at the fingertips of the dedicated waitlist staff. Besides helping your staff to keep up with patients, this is a perfect way to demonstrate to your CMS and UNOS surveyors how you know that your patient’s testing is up to date and that your selection criteria is continually applied to that patient.

  1. Weekly review meetings

The team needs to meet every week to review the patients on the waiting list. ALL decisions regarding a patient’s active or inactive status or even removal from the waiting list are made here. This prevents the “hallway conversations” that lead to confusion regarding a patient’s status. All changes in status or decisions regarding a patient are then documented in the patient’s medical record. The agenda for this meeting should always include:

Those patients seen in wait list clinic each week To ensure testing is up to date and they are well enough to receive a transplant.

Patients who are inactive on the waiting list Yes, all of them should be listed here and reviewed quickly to see if anyone can be made active again. Over time this list gets much shorter and the time needed to discuss them becomes very quick.

Top 10 patients who were up for an organ offer the previous week If they were up for an organ this past week, chances are they will come up again soon. By reviewing them quickly, the team can ensure that they are ready for this next offer.

All kidney patients with greater than 98% PRA Since this group can receive an offer at any time, you want to be sure they are always ready. By reviewing them briefly each week the team can help to do that.

Discussion items This is the list of things that have come up during the week that need the team’s input, such as borderline stress tests results, or a call from the dialysis unit regarding noncompliance.

I know that sounds like a lot to cover – and who has time for hours and hours of meetings each week? But they are working meetings, decisions are being made and plans put together. In addition, because the agenda is set and because the team is continually reviewing patients, the discussion time needed gets shorter and shorter. Pretty soon, a waitlist of over 300 can be completed in less than 1 hour!

  1. Regular check in with patients and dialysis units

By checking in with the patient and the dialysis unit at least every other month, the team is able to stay informed of problems as they arise and can address issues early. While it does take time, so does scrambling in the middle of the night to find another phone number to reach a patient or finding out about a possible toe infection after the patient arrives at the hospital for their transplant. And we all work better in the light of day. More importantly, this step leads to patient, staff and dialysis unit satisfaction. Patients feel more cared for, and more involved in their health care if they hear from their transplant center on a regular basis. And dialysis units appreciate the communication with the transplant center so they know where their patients are in the transplant process. Dialysis centers can feel involved in the care of the patient they are seeing three times a week, and it helps with their reporting requirement for CMS. We all know that having happy dialysis units helps make our jobs easier as we are kept better informed of the patient’s condition. Besides, who do you think that dialysis unit is going to recommend to a patient when they ask where they should be transplanted?!

I am not saying this is easy work. But with these four elements in place you can see real results. One center, with a waiting list of about 350, saw their percent inactive go from 60% to 23% within 9 months, while at the same time not reducing the total number of patients on the list. Another center was able to get their percentage of inactive to under 10% in a matter of months, on a waiting list of just over 100 patients. Neither center added staff or resources, nor compromised the care of their post-transplant or evaluation patients. As a matter of fact, both saw an increase in their new patient referrals.

Don’t put your wait list patients aside, waiting for more time or more staff to work on them. Remember this “forgotten” group starting today.


What do you think?

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About Koren Fay – Koren received her Bachelors Degree from the University of Vermont in political science. For the past twenty-five years, she has been involved in healthcare operations from frontline positions to administration. She has been a transplant administrator for the past fifteen years, managing the finances, quality, and operations of her programs. She and her team recently won the quality award at their organization for their waitlist improvements.

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