Answers to common questions about data submission

Answers to common questions about data submission

UNOS routinely receives questions from our member institutions about the data you are required to submit.

You should access online help on the UNet homepage for complete, step-by-step instructions regarding KPD, DonorNet, Waitlist, TIEDI, Security Administration, and Patient Safety applications. But  some of the more common questions we’ve received lately, and their answers, are posted below. 

Waitlist and SSN edits

Question: If my candidate’s SSN changes, can I make the update in Waitlist?

Yes, as of January 18, 2017, you no longer need to request that the Organ Center do it for you. You may edit the SSN of  any candidate listed in Waitlist. Once you enter the new SSN, you will be asked to re-enter the number in order for the system to confirm the accuracy of the information. 

ECMO & Invasive Mechanical Ventilation

Question: When removing a lung patient from Waitlist who has been placed on ECMO and Invasive Mechanical Ventilation, how do I add an additional row to document the second ventilator support?

Click the “add” button in the lower left corner of the Mechanical Ventilatory Support Data section.

Thoracic TCR and TRR forms, Inotropes/Vasodilators required field

Question: A transplant center reported that patients took inotropes or vasodilators at times either by IV or orally. Do we need to differentiate between the two methods? 

You only need to report IV inotropes or vasodilators in this field. 

TRF Forms (Pediatric vs. Adult)

Question: When do Transplant Recipient Follow-up (TRF) forms change from pediatric to adult? 

UNet will continue to generate pediatric follow-up forms through a recipient’s 25th birthday. When the recipient turns 26, UNet will automatically generate an adult TRF form. 

Recipient Histocompatibility Form

Question: The question, “Which historical crossmatch tests were performed?” is asked on the Recipient Histocompatibility form. Does historical crossmatch refer to the Auto crossmatch or the Peak Serum crossmatch?

Historical crossmatch is a crossmatch performed with any sera other than the most recent.

Question: How do we report the historical crossmatch when one of the results (T-cells) was positive and one (B-cells) was negative for the same technique?

In case of both positive and negative crossmatch result, please report a positive crossmatch result.

Removal Code 22 – Transplanted in Another Country

Question: We learned that one of our active candidates has received a transplant in another country.  How do we report this?

You need to select Removal Code 22 – Transplanted in Another Country. For the country of transplant, select the country in which the transplant occurred. If the candidate has notified your program that he or she has received a transplant in another country, thereby eliminating the need for a transplant in the United States, select the country in which it will occur. If you don’t know which country the transplant took place in, select “Unknown” from the list. This is a required field.

PVD on the kidney TCR

Question: Should we report an old amputation as Symptomatic Peripheral Vascular Disease on the Transplant Candidate Registration (TCR)?

A previous amputation performed due to Peripheral Vascular Disease (PVD)/Peripheral Arterial Disease (PAD) would be considered a sign of Symptomatic PVD for purposes of the TCR. An important goal of OPTN data collection is to allow appropriate risk stratification, and since PVD/PAD can be treated but doesn’t generally resolve, the risk would be the same in someone who previously had an amputation.

Question: Would a stroke before being listed, along with atherosclerosis, constitute evidence of Symptomatic Peripheral Vascular Disease (PVD) on the Transplant Candidate Registration (TCR)?

Answer: PVD is often used interchangeably with Peripheral Arterial Disease (PAD).The American Heart Association defines PVD as disease of blood vessels outside the heart and brain. The NIH (National Heart, Lung, and Blood Institute) says that PVD and PAD are synonymous and that PAD is atherosclerotic disease in arteries carrying blood to the head, organs, and limbs.

Stroke/CVA can be a manifestation of PVD/PAD; however, clearly not all strokes/CVAs are the result of PVD/PAD. Ruptured aneurysms, as an example, cause strokes/CVAs but are not related to PVD/PAD. Embolic strokes can result from valvular heart disease or conditions such as atrial fibrillation. The distinction requires careful clinical judgment and can be helped by appropriate lab or imaging tests. We think that, if in the clinical judgment of the physicians caring for or evaluating the potential recipient, a stroke/CVA was the result of atherosclerotic cerebrovascular disease, then that meets the UNOS definition of symptomatic PVD. In those circumstances carotid imaging or similar studies might be helpful supporting information but not a requirement. An important goal of OPTN data collection is to allow appropriate risk stratification. We think this approach to PVD helps accomplish this goal.

Clearly not all strokes/CVAs meet the definition of PVD. Careful evaluation of the clinical history, physical exam, and associated lab and imaging studies should allow the evaluating physicians to make a reasonable assessment of the presence or absence of symptomatic PVD.

Reporting a Patient’s Death

Q. Do I report a patient’s death on the TRR form if he or she died soon after the transplant date?

Yes, you should report the death of any patient that dies before they are discharged on the TRR. 

  • The TRR form should have a patient status date, status and information on the patient at the time of hospital discharge or six weeks after transplant, whichever comes first.
  • If a patient dies more than six weeks after transplant, you should not report the death on the TRR but rather on the 6 MO form, if it has generated. If a 6 MO form has not been generated, report the death on an Interim Event death form.

Q: When do I create an Interim Event death form?

If there is already an expected form for the patient, complete and validate the form with the death information. Once you validate the form, it will become an RD – Recipient Death form. Unless there is a lost form or other form that needs to be removed, you do not need to open a Service Portal request to notify us of the patient’s death. If there is no expected form and you need to report a patient’s death in Tiedi, you would use the Report Interim Event link from the patient history page.

Vessel Reporting

Q. When is it OK to use the “Other” option for a vessel disposition?

You should only use that option in rare instances. An example would be if an expected vessel disposition appears in your queue and you have no record of your center having received that vessel. If this occurs, you should first check with the OPO. If they mistakenly marked the vessel as accompanying an organ to your center, ask them to indicate that mistake in a request to the UNOS Service Portal. That request will be forwarded to the Data Quality Department to review/correct the mistake. If the OPO’s records conflict with yours, you may file the vessel disposition under “Other.” This option will create an additional text box, allowing you to explain the issue.

Ventricular Assist Device (VAD) Reporting

Q. A candidate had one “Ventricular Assist Device (VAD)” in place on the day of listing, but it was removed and replaced with another VAD before the Transplant Candidate Registration (TCR) was due. How do I report that?

You should only report the Ventricular Assist Device (VAD) that was in place on the day you listed the candidate. Report this on the  Transplant Candidate Registration (TCR) form in the VAD Field. You should report the other VAD when you remove the candidate from  the waitlist. If the candidate is removed because they received a transplant, you should report the VAD on the Transplant Recipient Registration (TRR) form.

Defining Admission

Q. How do you define an admission? Does admitting a recipient (or living donor) for observation count? Or do they need to be an inpatient or have a stay longer than 24 hours?

We define an admission as any admission that is reimbursable under current CMS regulation.

Waiting List Removal:

Q. How do I report transplant dates for a multi-organ transplant procedure?

When you remove a waiting list registration, the transplant date you report should be  the first anastomosis date of the organ(s) associated with that registration. For example, if you remove a kidney/pancreas registration from the waiting list, you can only report one transplant date (anastomosis date of whichever organ was first anastomosed). If  your recipient receives a kidney and a liver, you should report  the kidney transplant date as the anastomosis date of the kidney, and report the liver transplant date as the anastomosis date of the liver.  

 

Transplant Recipient Follow-up (TRF) Form:

Bronchiolitis Obliterans Syndrome (BOS)

Q. If we have already reported on a previous TRF that a recipient has BOS grade 1, do we only report BOS on future follow-up forms if the grade progresses?

Please report the recipient’s current grade of BOS on each follow-up form.  This simplifies reporting because you do not need to review previous follow-up forms to see what has already been reported.

Transplant Recipient Registration (TRR) Form:
Hemodynamics on Thoracic TRR:
Q. Is it acceptable to report invasive hemodynamic measurements from the time of listing if those are the most recent measurements as of transplant?

It is better to indicate the most recent values you have, even if they from listing or before listing, than to indicate “not done.”

Q. Should you always report the most recent value for each measurement, even if they are from different days?

You should enter the most recent value you have for each measurement, even if they are from different dates or times. For example, that might mean reporting the wedge and CO from Monday, and PA pressures from Tuesday.

General question, all forms:
Q. Status Fields exist for some data elements and enable you to indicate a value of “Missing” or “Unknown” or “Not done” in lieu of entering an actual value. What is the definition of Missing, Unknown, and Not done?

Missing – you do not have the data and cannot get it
Unknown – you do not know if the data exist, and there is no way for you to verify that it does or does not exist. An example of when this might be used would be if the historian for a patient was not aware of a particular element of a patient’s social history and there was no way to get that information.
Not done – you did not perform the test. For a specific example, on the thoracic TRR we collect hemodynamics before the transplant. If you did not perform any invasive hemodynamic measurements at any point before the transplant (even during the evaluation phase), then you could select ‘Not done.’

Have a question? Visit the UNOS Service Portal on the UNet homepage and select “Ask a Question” or call UNOS Customer Service at (800) 978-4334.

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