The top five questions we hear from waitlisted patients

The top five questions we hear from waitlisted patients

By: Jay Milton

After the flurry of activity surrounding the referral/evaluation/listing phase, patients begin their long wait for a transplant.  And then they wait.  And wait.  And wait.  That education that you provided at the time of listing can often become a distant memory.  As time passes and some of this information is forgotten, patients have questions, issues and concerns, and will do better staying ready for transplant if their concerns are acknowledged and addressed.

Our company offers a service called Waitlist Management, and we call and check-in with more than 3,000 patients across the country on a regular, ongoing basis. Because we call such a large volume of patients, we hear all kinds of questions, but the most common ones are universal across patients and centers.  I asked our Transplant Coordinator Assistants (the individuals who make the calls) to list the most commonly asked questions and concerns that they hear from patients on the kidney waiting list.  These are certainly the same questions that your patients have.  You might consider a FAQ letter that addresses some of these, which may alleviate some calls to your coordinators.

In no particular order, this is what we hear….

·         Lack of communication.  Patients frequently complain about a perceived lack of communication or connection with their center after listing.  They understand that they will be waiting for awhile, but often feel as though they have been “forgotten”. They may experience anxiety from not knowing what is going on.  Even if the truth is that nothing is going on, and nothing has changed with the exception of earning additional time on the waitlist, patients still like to hear from you.  A patient who feels cared about is an engaged patient.

·         Where am I on the list?  When can I expect to get transplanted?  Of course, we hear this one a lot.  Feel free to use our generic explanation:  “There is really no actual ‘numbered list.’ Your listing date is either when you were placed on the waiting list, or when you started dialysis – whichever was first. Some contributing factors to wait time are blood type, medical conditions, antibodies, and the availability of a compatible organ. Unfortunately, there is never a way to know exactly when you are going to get ‘the call.’ This is why it is very important to let us know if anything changes for you, so that you can be ready when the call comes.”

·         Living donation questions.  Who would make a good living donor, what health conditions would prevent a willing person from being a donor (like high blood pressure, etc.)? How long does it take from starting the testing process to actual donation? We even hear basic questions like “How do potential donors start the process?”  These questions are excellent opportunities to drive home good approaches for sharing the need for an organ donor and making “the ask”.

·         Travel plans.  How far can I travel away from the center and still be able to make it back in time for transplant?  Who do I contact if I am going to exceed that distance/time?

·         When can I return to work?  Following the surgery, how long should I expect to be out of work?  What about my living donor – how long will s/he be out of work?

It’s understood that between new evaluations and re-evaluations, regularly reaching out to your listed patients can be difficult. Creating a document that you mail to patients once a year, or every six months, that answers some of these questions may lessen some of the administrative burden on your staff.  You might even be able to send this in conjunction with your semi-annual SRTR reports to minimize the number of mailings required.  Of course, this doesn’t take the place of the one-on-one interaction that reassures and re-engages your patients, but maybe it will give your team a few more minutes each day to do just that.

What do you think?

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