Post 5-year Follow-up Pancreas Instructions

Pancreas Post 5 Year Transplant Recipient Followup (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 Pancreas Transplant Recipient Follow-up (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 1year transplant anniversary date; the 2-year follow-up should contain information from the day
after the 1-year 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. The follow-up
records are generated for two years post graft failure to track patient survival following graft
failure, based on OPTN/UNOS Policy 7.1.3. The follow-up period for all transplant recipients is
until death or retransplantation.
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 Accessing Patient Records and Records Generation.)
If the patient is lost to follow-up, follow the steps for Reporting Lost to Follow-up.
View OPTN/UNOS Policy on Data Submission Requirements for additional information.
To correct information that is already displayed on an electronic record, call 1-800-978-4334.
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 is a required field.
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 1year 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.
Zip Code: Enter the recipient's zip code, of their permanent address, at the time of follow-up.
Provider Information
Recipient Center: The recipient center will display. Verify the transplant center name and the
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 1-800978-4334.
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 6month and annual follow-ups should be completed indicating one of those two events.
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.
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.
Functional Status: Select the choice that best describes the recipient's functional status just
prior to the time of transplant.
Note: The Karnofsky Index will display for adults aged 18 and older.
10% - Moribund, fatal processes progressing rapidly
20% - Very sick, hospitalization necessary: active treatment necessary
30% - Severely disabled: hospitalization is indicated, death not imminent
40% - Disabled: requires special care and assistance
50% - Requires considerable assistance and frequent medical care
60% - Requires occasional assistance but is able to care for needs
70% - Cares for self: unable to carry on normal activity or active work
80% - Normal activity with effort: some symptoms of disease
90% - Able to carry on normal activity: minor symptoms of disease
100% - Normal, no complaints, no evidence of disease
Unknown
Note: The Lansky Scale will display for pediatrics aged 1 to 17.
10% - No play; does not get out of bed
20% - Often sleeping; play entirely limited to very passive activities
30% - In bed; needs assistance even for quiet play
40% - Mostly in bed; participates in quiet activities
50% - Can dress but lies around much of day; no active play; can take part in quiet
play/activities
60% - Up and around, but minimal active play; keeps busy with quieter activities
70% - Both greater restriction of and less time spent in play activity
80% - Active, but tires more quickly
90% - Minor restrictions in physically strenuous activity
100% - Fully active, normal
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 listing.
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 listing.

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.
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 discharge in the
appropriate space, in feet and inches or centimeters. If the recipient’s height is unavailable,
select the appropriate status from the ST field (N/A, Not Done, Missing, Unknown). Net 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 discharge in the
appropriate space, in pounds or kilograms. If the recipient’s weight is unavailable, select the
appropriate status from the ST field (N/A, Not Done, Missing, Unknown). UNet will generate
and display calculated percentiles based on the 2000 CDC growth charts.
BMI (Body Mass Index): For recipients 18 years old or younger 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 weight-for-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 5year-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/.
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).
Diabetes onset during the follow-up period: (Complete for recipients younger than 18 years
of age at transplant and younger than 26 years of age at follow-up.) If the recipient developed
diabetes during the follow-up period, select Yes. If not, select No. If unknown, select UNK. If
Yes is selected, indicate whether the recipient was dependent on insulin.
If yes, insulin dependent: If the recipient is insulin dependent, select Yes. If not, select
No. If unknown, select UNK.
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: (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 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.