OPTN- Pancreas Follow-up

Organ Procurement and Transplantation Network and Scientific Registry of Transplant Recipients Data System

Pancreas Post 5 Year Transplant Recipient Follow Up Instructions

OPTN- Pancreas Follow-up

OMB: 0915-0157

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Pancreas Post 5 Year Transplant Recipient Follow-up
(TRF) Record Field Descriptions
Transplant Recipient Follow-up (TRF) records are generated in Tiedi® at six months, one year and
annually thereafter following transplantation, until either graft failure, recipient death or lost to follow-up
is reported.
The TRF record is to be completed by the transplant center responsible for follow-up of the recipient at
intervals of six months, one year and annually thereafter. The record is to contain only the applicable
patient information since the last follow-up period. It is not to contain information pertaining solely to the
previous or next follow-up period. For example: the 6-month follow-up should contain information from
the time after the TRR was completed to the 6-month transplant anniversary date; the 1-year follow-up
should contain information from the day after the 6-month transplant anniversary date to the 1-year
transplant anniversary date; the 2-year follow-up should contain information from the day after the 1year transplant anniversary date to the 2-year anniversary date.
If the recipient dies or experiences a graft failure between follow-up intervals, complete an interim
record containing the information pertinent to death or graft failure.
TRF records generated before June 30, 2002 are forgiven except for the one-year, three-year,
death/graft failure or most recently expected follow-up record. Amnesty records may be accessed by
selecting the Expected/Amnesty and/or Amnesty option on the Search page. (For additional
information, see Searching for Patient Records and Records Generation.)
If the patient is lost to follow-up, follow the steps for Reporting Lost to Follow-up.
The TRF record must be completed within 30 days from the record generation date. See OPTN/UNOS
Policies for additional information. Use the search feature to locate specific policy information on Data
Submission Requirements.
To correct information that is already displayed on an electronic record, call the UNetSM Help Desk at 1800-978-4334.
Recipient Information
Name: Verify the last name, first name and middle initial of the transplant recipient is correct. If the
information is incorrect, corrections may be made on the recipient's TCR record.
DOB: Verify the displayed date is the recipient's date of birth. If the information is incorrect, corrections
may be made on the recipient's TCR record.
SSN: Verify the recipient's social security number is correct. If the information is incorrect, contact the
Help Desk at 1-800-978-4334.
Gender: Verify the recipient's gender is correct. If the information is incorrect, corrections may be made
on the recipient's TCR record.
HIC: Verify the 9 to 11 character Health Insurance Claim number for the recipient indicated on the
recipient's most recently updated TCR record is correct. If the recipient does not have a HIC number,
you may leave this field blank.
Tx Date: The recipient's transplant date, reported in the Recipient Feedback, will display. Verify the
transplant date is the date of the beginning of the first anastomosis. If the operation started in the
evening and the first anastomosis began early the next morning, the transplant date is the date that the
first anastomosis began. The transplant is considered complete when the cavity is closed and the final
skin stitch/staple is applied.
Previous Follow-up: The recipient's follow-up status, reported in the previous TRF record, will display.
Verify the recipient's previous follow-up status is correct.

Previous Px Stat Date: The recipient's patient status date, reported in the previous TRF record, will
display. Verify the recipient's previous patient status date is correct.
Transplant Discharge Date: Enter the date the recipient was released to go home, or verify that the
discharge date displayed is the date the recipient was released to go home. The patient's hospital stay
includes total time spent in different units of the hospital, including medical and rehab. This field is
required.
Note: The Transplant Discharge Date can only be edited on the patient's TRR, 6-month TRF and
1-year TRF. To correct this information on a follow-up that is after the 1-year TRF, access
one of these three records and enter the correct date. The corrected information will
automatically update on the other records.
State of Permanent Residence: Select the name of the state, of the recipient's permanent address, at
the time of follow-up. This field is required. (List of State codes)
Zip Code: Enter the recipient's zip code, of their permanent address, at the time of follow-up. This field
is required.
Provider Information
Recipient Center: The recipient center will display. Verify that the transplant center name, center code,
and the provider number, (6-character Medicare identification number of the hospital where the
transplant recipient was transplanted) are correct.
Followup Center: The follow-up center, reported in the recipient's previous validated TRF record, will
display. Verify the center name, center code and provider number for the center following the patient.
Donor Information
UNOS Donor ID #: The UNOS Donor ID number, reported in the Recipient Feedback, will display.
Each potential donor is assigned an identification number by OPTN/UNOS. This ID number
corresponds to the date the donor information was entered into the OPTN/UNOS computer system.
Donor Type: The donor type, reported in the Recipient Feedback, will display. Verify the recipient's
donor type is correct. If the information is incorrect, contact the Help Desk at 1-800-978-4334.
Deceased indicates the donor was not living at the time of donation.
Living indicates the donor was living at the time of donation.
Patient Status (At Time of Follow-up)
Date: Last Seen, Retransplanted or Death: Enter the date the patient was last seen, or the date of
death, or retransplant for this recipient, using the standard 8-digit numeric format of MM/DD/YYYY. The
follow-up records (6-month, 1-year, 2-year, etc.) are to be completed within 30 days of the 6-month and
yearly anniversaries of the transplant date. If the recipient died or the graft failed, and you have not
completed an interim follow-up indicating these events, the 6-month and annual follow-ups should be
completed indicating one of those two events. This field is required.
Patient Status: If the recipient is living at the time of follow-up, select Living. If the recipient died
during this follow-up period, select Dead. If the recipient received another kidney from a different donor
during the follow-up period, select Retransplanted. If Dead is selected, indicate the cause of death.
This field is required. (List of Patient Status codes)
Living
Dead
Retransplanted
Primary Cause of Death: If the Patient Status is Dead, select the patient's cause of death. If
an Other code is selected, enter the other cause of death in the space provided. (List of
Primary Cause of Death codes)

Functional Status: (Complete for recipients younger than 18 years of age at transplant and younger
than 26 years of age at follow-up.) Select the choice that best describes the recipient's functional status
at the time of follow-up. This field is required. (List of Functional Status codes)
100% - Fully active, normal
90% - Minor restrictions in physically strenuous activity
80% - Active, but tires more quickly
70% - Both greater restriction of and less time spent in play activity
60% - Up and around, but minimal active play; keeps busy with quieter activities
50% - Can dress but lies around much of day; no active play; can take part in quiet
play/activities
40% - Mostly in bed; participates in quiet activities
30% - In bed; needs assistance even for quiet play
20% - Often sleeping; play entirely limited to very passive activities
10% - No play; does not get out of bed
Not Applicable (patient < 1 year old)
Unknown
Note: This evaluation should be in comparison to the person's normal function, indicating how the
patient's disease has affected their normal function.
Cognitive Development: (Complete for recipients younger than 18 years of age at transplant and
younger than 26 years of age at follow-up.) Select the choice that best describes the recipient's
cognitive development at the time of follow-up. (List of Cognitive Development codes)
Definite Cognitive Delay/Impairment (verified by IQ score <70 or unambiguous behavioral
observation)
Probable Cognitive Delay/Impairment (not verified or unambiguous but more likely than not,
based on behavioral observation or other evidence)
Questionable Cognitive Delay/Impairment (not judged to be more likely than not, but with some
indication of cognitive delay/impairment such as expressive/receptive language and/or learning
difficulties)
No Cognitive Delay/Impairment (no obvious indicators of cognitive delay/impairment)
Not Assessed
Motor Development: (Complete for recipients younger than 18 years of age at transplant and younger
than 26 years of age at follow-up.) Select the choice that best describes the recipient's motor
development at the time of follow-up. (List of Motor Development codes)
Definite Motor Delay/Impairment (verified by physical exam or unambiguous behavioral
observation)
Probable Motor Delay/Impairment (not verified or unambiguous but more likely than not, based
on behavioral observation or other evidence)
Questionable Motor Delay/Impairment (not judged to be more likely than not, but with some
indication of motor delay/impairment)
No Motor Delay/Impairment (no obvious indicators of motor delay/impairment)
Not Assessed
Clinical Information
Date of Measurement: (Complete for recipients younger than 18 years of age at transplant and
younger than 26 years of age at follow-up.) Enter the date, using the 8-digit format of MM/DD/YYYY,
the recipient’s height and weight were measured. This field is required.

Height: (Complete for recipients younger than 18 years of age at transplant and younger than 26 years
of age at follow-up.) Enter the height of the recipient at the time of follow-up in the appropriate space, in
feet and inches or centimeters. This field is required. If the recipient’s height is unavailable, select the
appropriate status from the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes) UNet
will generate and display calculated percentiles based on the 2000 CDC growth charts.
Weight: (Complete for recipients younger than 18 years of age at transplant and younger than 26 years
of age at follow-up.) Enter the weight of the recipient at the time of follow-up in the appropriate space, in
pounds or kilograms. This field is required. If the recipient’s weight is unavailable, select the
appropriate status from the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes) UNet
will generate and display calculated percentiles based on the 2000 CDC growth charts.
BMI (Body Mass Index): For candidates less than 20 years of age during the follow-up period, UNet will
generate and display calculated percentiles based on the 2000 CDC growth charts.
Percentiles are the most commonly used clinical indicator to assess the size and growth patterns
of individual children in the United States. Percentiles rank the position of an individual by indicating
what percent of the reference population the individual would equal or exceed (i.e. on the weightfor-age growth charts, a 5 year-old girl whose weight is at the 25th percentile, weighs the same or
more than 25 percent of the reference population of 5-year-old girls, and weighs less than 75
percent of the 5-year-old girls in the reference population). For additional information about CDC
growth charts, see http://www.cdc.gov/.
Note: Users who check the BMI percentiles against the CDC calculator may notice a discrepancy
that is caused by the CDC calculator using 1 decimal place for height and weight and UNetsm using
4 decimal places for weight and 2 for height.
Graft Status: Select the status that best describes the pancreas graft status.
Note: If death is indicated for the recipient, and the death was a result of some other factor
unrelated to graft failure, select Functioning.
Functioning: The graft has sufficient function so that the recipient is NOT receiving any insulin or
oral medication for blood sugar control.
Partial Function: The patient is taking some insulin, but < 50% of the usual amount taken before
transplant, or C-Peptide is present.
Failed: The graft has totally failed and the patient is completely dependent upon insulin or oral
medication for blood sugar control.
If Failed is selected, complete the following fields:
Date of Failure: Enter the date of graft failure using the standard 8-digit numeric format of
MM/DD/YYYY.
Primary Causes of Graft Failure: Select the causes of graft failure. If Other, Specify
is selected, enter the cause of failure in the space provided.
Graft/Vascular Thrombosis
Infection
Bleeding
Anastomotic Leak
Primary Non-Function
Acute Rejection
Chronic Rejection
Hyperacute Rejection
Biopsy Proven Isletitis
Pancreatitis
Other, Specify
Contributory causes of graft failure: For each of the causes listed select Yes, No, or
UNK to indicate whether each is a contributory cause of graft failure. Select No for the

primary cause, since it cannot be both primary and secondary cause of graft failure. If
Other, Specify is selected, specify the cause in the space provided.
Graft/Vascular Thrombosis
Infection
Bleeding
Anastomotic Leak
Acute Rejection
Chronic Rejection
Biopsy Proven Isletitis
Pancreatitis
Patient Noncompliance
Other, Specify
Most Recent Serum Creatinine: Enter the most recent lab value for the serum creatinine value in
mg/dl taken closest to the time of follow-up. If the value is not available, select the status from the ST
field (N/A, Not Done, Missing, Unknown). (List of Status codes)
Coronary Artery Disease Since Last Follow-up: (Complete for recipients younger than 18 years of
age at transplant and younger than 26 years of age at follow-up.) If the recipient has experienced new
signs and symptoms of coronary artery disease at the time of follow-up, select Yes. If not, select No. If
unknown, select Unk.
Postransplant Malignancy: If the recipient has been diagnosed with any malignant cancer since the
last follow-up, select Yes. If not, select No. If unknown, select UNK. If Yes is selected, at least one of
the fields listed below must be completed. A Post Transplant Malignancy record will generate when one
or more of the fields listed below is selected. For additional information, see Post Transplant
Malignancy Record Fields.
Donor Related: If the malignancy is donor related, select Yes. If not, select No. If unknown, select
UNK. If Yes is selected, the Donor Related section will be displayed on the Post Transplant
Malignancy record. For additional information, see Post Transplant Malignancy Record Fields Donor Related.
Recurrence of Pre-Tx tumor: If a pre-transplant tumor has recurred, select Yes. If not, select No.
If unknown, select UNK. If Yes is selected, the Recurrence of Pretransplant Malignancy section will
be displayed on the Post Transplant Malignancy record. For additional information, see Post
Transplant Malignancy Record Fields - Recurrence of Pretransplant Malignancy.
De Novo Solid Tumor: If the cancer was a De Novo solid tumor, select Yes. If not, select No. If
unknown, select UNK. If Yes is selected, the Post Transplant De Novo Solid Tumor section will be
displayed on the Post Transplant Malignancy record. For additional information, see Post
Transplant Malignancy Record Fields - Post Transplant De Novo Solid Tumor.
De Novo Lymphoproliferative disease and Lymphoma: If the cancer was post transplant
lymphoproliferative disease or lymphoma, select Yes. If not, select No. If unknown, select UNK. If
Yes is selected, the Post Tx Lymphoproliferative Disease and Lymphoma section will be displayed
on the Post Transplant Malignancy record. For additional information, see Post Transplant
Malignancy Record Fields - Post Tx Lymphoproliferative Disease and Lymphoma.
Note: Please report each type of malignancy only once in the follow-up process.
Note: When a patient has a tumor during one follow up period and the tumor continues into the next
follow-up period without going away, the tumor should only be reported on that first follow-up
record and not reported on the next follow-up record. The tumor should be reported on
subsequent follow-up records ONLY if the tumor goes away and then returns in the next
follow-up period.


File Typeapplication/pdf
File TitleMicrosoft Word - Pancreas Post 5 Year Transplant Recipient Follow Up Instructions
Authorbryantpc
File Modified2011-04-12
File Created2011-04-12

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