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 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.
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 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 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 is a required field. (List of State codes)
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 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.
Physician Name: Enter the name of the physician who is following the patient.
NPI #: Enter the 10-character CMS (Center for Medicare and Medicaid Services, formerly HCFA) assigned National Provider Identifier of the transplant physician. Your hospital billing office may be able to obtain this number for you.
Follow-up Care Provided By: Indicate where the follow-up care was provided. If Other Specify is selected, specify the provider in the space provided. (List of Provider Type codes)
Transplant Center
Non Transplant Center Specialty
Physician
Primary Care Physician
Other Specify
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.
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. (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)
Contributory Cause of Death: If the Patient Status is Dead, select the patient's contributory cause of death. If an Other code is selected, enter the other cause of death in the space provided. (List of Contributory Cause of Death codes)
Contributory Cause of Death: If the Patient Status is Dead, select the patient's contributory cause of death. If an Other code is selected, enter the other cause of death in the space provided. (List of Contributory Cause of Death codes)
Hospitalizations:
Has the patient been hospitalized since the last patient status date: If the recipient has been hospitalized since the last patient status report, regardless of patient status (living, dead, or retransplanted), select Yes. If not, select No. If unknown, select UNK.
Note: Hospitalizations should ONLY include inpatient visits.
Number of hospitalizations: If the recipient was hospitalized, enter the number of hospitalizations. If the number is unavailable, select the appropriate status from the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes)
Hospitalized for rejection: If the recipient was hospitalized for rejection during this follow-up period, select Yes. If not, select No. If unknown, select UNK.
Hospitalized for infection: If the recipient was hospitalized for infection during this follow-up period, select Yes. If not, select No. If unknown, select UNK.
Noncompliance:
Was there evidence of noncompliance with immunosuppression medication during this follow-up period that compromised the patient's recovery: If the recipient had been non-compliant during this follow-up period, select Yes. If not, select No. If unknown, select UNK. This field is optional.
Note: If this is a 1-year follow-up, then report any new signs or symptoms since transplant.
Functional Status: Select the choice that best describes the recipient's functional status at the time of follow-up. (List of Functional Status codes)
Note: The Karnofsky Index will display for adults aged 18 and older.
100% - Normal, no complaints, no evidence of disease
90% - Able
to carry on normal activity: minor symptoms of disease
80% -
Normal activity with effort: some symptoms of disease
70% -
Cares for self: unable to carry on normal activity or active work
60%
- Requires occasional assistance but is able to care for needs
50%
- Requires considerable assistance and frequent medical care
40%
- Disabled: requires special care and assistance
30% - Severely
disabled: hospitalization is indicated, death not imminent
20% -
Very sick, hospitalization necessary: active treatment necessary
10%
- Moribund, fatal processes progressing rapidly
Unknown
Note: The Lansky Scale will display for pediatrics aged 1 to 17.
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.
Physical Capacity: Select the choice that best describes the recipient’s physical capacity at the time of follow-up. If the recipient's Medical Condition indicates they are hospitalized, select Not Applicable (hospitalized). This field is optional for adult recipients only. (List of Physical Capacity codes)
No Limitations
Limited Mobility
Wheelchair bound or more
limited
Not Applicable (hospitalized)
Unknown
Physical Capacity is the ability to perform bodily activities such as walking, dressing, bathing, grooming, etc.
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
Working for income: (Complete for recipients 19 years of age or older.) If the recipient was working for income at the time of follow-up, select Yes. If not, select No. If reporting the recipient's death, indicate if the recipient was working for income just prior to death.
If No, Not Working Due To: If No is selected, indicate the reason why the recipient was not working. (This field is optional for adult recipients only.) (List of Not Work Reason codes)
Disability - A physical or mental impairment that interferes with or prevents a candidate from working (e.g. arthritis, mental retardation, cerebral palsy, etc).
Demands of Treatment - An urgent medical treatment that prevents a candidate from working (e.g. Dialysis).
Insurance Conflict - Any differences between a candidate and insurance company that prevents them from working.
Inability to Find Work - The lack of one's ability to find work (e.g. lack of transportation, work experience, over qualification, unavailable work, etc.).
Patient Choice - Homemaker - A candidate who chooses to manage their own household, instead of performing work for pay.
Patient Choice - Student Full Time/Part Time - A candidate who is enrolled and/or participating in college.
Patient Choice - Retired - A candidate who no longer has an active working life such as an occupation, business or office job.
Patient Choice - Other - Any reason not listed above that would prevent a candidate from working.
Not Applicable - Hospitalized - Select only if the patient's Medical Condition indicates they are in the hospital.
Unknown
If Yes: If Yes is selected, indicate the recipient's working status. This field is optional for adult recipients only. (List of Working codes)
Working Full Time
Working Part Time due to Demands of
Treatment
Working Part Time due to Disability
Working Part
Time due to Insurance Conflict
Working Part Time due to
Inability to Find Full Time Work
Working Part Time due to
Patient Choice
Working Part Time Reason Unknown
Working,
Part Time vs. Full Time Unknown
Academic Progress: (Complete for recipients less than 19 years of age.) Select the choice that best describes the recipient's academic progress at the time of follow-up. If reporting the recipient's death, select the choice that best describes the recipient's progress just prior to death. If the candidate is less than 5 years old or has graduated from high school, select Not Applicable < 5 years old/High School graduate or GED. (List of Academic Progress codes)
Within One Grade Level of Peers
Delayed Grade Level
Special
Education
Not Applicable < 5 years old/High School graduate
or GED
Status Unknown
Academic Activity Level: (Complete for recipients less than 19 years of age.) Select the choice that best describes the recipient's academic activity level at the time of follow-up. If reporting the recipient's death, select the choice that best describes the recipient's academic activity just prior to death. If the candidate is less than 5 years old or has graduated from high school, select Not Applicable < 5 years old/High School graduate or GED. (List of Academic Activity Level codes)
Full academic load
Reduced academic load
Unable to
participate in academics due to disease or condition
Not
Applicable < 5 years old/High School graduate or GED
Status
Unknown
Primary Insurance at Follow-up: Select the recipient's source of primary payment (largest contributor) during the follow-up period.
Private insurance refers to funds from agencies such as Blue Cross/Blue Shield, etc. It also refers to any worker's compensation that is covered by a private insurer.
Public insurance - Medicaid refers to state Medicaid funds.
Public insurance - Medicare FFS (Fee-for-Service) refers to funds, from the government in which doctors and other health care providers are paid for each service provided to a recipient. For additional information about Medicare, see http://www.medicare.gov/Choices/Overview.asp.
Public insurance - Medicare & Choice (also known as Medicare Managed Care) refers to funds from the government in which doctors and other health care providers are paid for each service provided to a recipient, along with additional benefits such as coordination of care or reducing-out-of-pocket expenses. Sometimes a recipient may receive additional benefits such as prescription drugs. For additional information about Medicare, see http://www.medicare.gov/Choices/Overview.asp.
Public insurance - CHIP (Children's Health Insurance Program)
Public insurance - Department of VA refers to funds from the Veterans Administration.
Public insurance - Other government
Self indicates that the cost of follow-up will be paid for by the recipient.
Donation indicates that a company, institution, or individual(s) donated funds to pay for the follow-up period and care of the recipient.
Free Care indicates that the transplant hospital will not charge recipient for the costs of the follow-up period.
Foreign Government refers to funds provided by foreign government (Primary only). Specify foreign country in the space provided. (List of Foreign Country codes)
Unknown
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: Enter the height of the recipient at the time of follow-up 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). (List of Status codes) For recipients 18 years old or younger at the time of follow-up, UNet will generate and display calculated percentiles based on the 2000 CDC growth charts. This field is required for pediatric recipients only.)
Weight: Enter the weight of the recipient at the time of follow-up 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). (List of Status codes) For recipients 18 years old or younger at the time of follow-up, UNet will generate and display calculated percentiles based on the 2000 CDC growth charts. This field is required for pediatric recipients only.
BMI (Body Mass Index): For candidates less than 20 years of age during this 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 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: If the graft is functioning at the time of follow-up, select Functioning. If the graft is not functioning, select Failed.
Note: If death is indicated for the recipient, and the death was a result of some other factor unrelated to graft failure, select Functioning.
If Failed is selected, complete the following fields.
Date of Graft Failure: Enter the date of graft failure using the standard 8-digit numeric format of MM/DD/YYYY.
Primary Cause of Graft Failure: Select the cause of graft failure. (List of Graft Failure codes)
Primary Non-Function
Acute Rejection
Chronic
Rejection/Atherosclerosis
Other, Specify
Titer Information: For pediatric recipients 2 years old or younger, Status 1 at listing, received a heart with incompatible ABO, and death or graft failure is reported, complete the following:
Current B Titer: If the recipient’s ABO blood-type is A or O, enter the current B titer value and Sample Date.
Current A Titer: If the recipient’s ABO blood-type is B or O, enter the current A titer value and Sample Date.
Graft Function: For heart only recipients, complete the Heart section. For lung only recipients, complete the Lung section. For heart-lung recipients, complete both sections.
HEART (AND HEART/LUNG):
Ejection Fraction: Enter the most recent ejection fraction available for the recipient. If unavailable, select the status for the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes) The ejection fraction range must fall between 5% and 90%. If you only enter a shortening fraction, select Not Done.
Shortening Fraction: (Displays for recipient's 18 years of age or younger.) Enter the most recent shortening fraction available for a pediatric patient 18 years old or younger. The shortening fraction range must fall between 0% and 50%. If unavailable, select the status for the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes)
Note: If you only enter a Shortening Fraction, select Not Done in the Ejection Fraction field.
Pacemaker: If the recipient has had a permanent pacemaker inserted since the last follow-up, select Yes. If not, select No. If unknown, select Unk.
Coronary Artery Disease: If the recipient has experienced new signs and symptoms of coronary artery disease sine the follow-up, select Yes. If not, select No. If unknown, select Unk.
Note: If this is a 1-year follow-up, then report any new signs or symptoms since transplant.
Clinically Significant Events: If the recipient has exhibited clinically significant events related to coronary artery disease (e.g. myocardial infarction, heart catheterization, angioplasty, unstable angina), select Yes. If not, select No. If unknown, select Unk. This field is optional.
LUNG (AND HEART/LUNG):
FeV1: Enter the most recent % predicted value available for forced expiratory volume at one second. Provide FeV1 values in percentages only. If unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes)
O2 Requirement at Rest: Enter the recipient's oxygen requirement at rest at the time of follow-up. Provide O2 values in L/min. If the recipient does not require oxygen at rest, enter 0 (zero). If unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown). (List of Status codes)
Bronchiolitis Obliterans Syndrome: If the recipient has been diagnosed with bronchiolitis obliterans syndrome since the last follow-up, select Yes with the appropriate grade, or Yes, Grade UNK if the grade is not known. If not, select NO BOS. If unknown, select Unknown. (List of Bronchiolitis Obliterans Syndrome codes)
No BOS
Yes, Grade OP
Yes, Grade 1
Yes, Grade 2
Yes,
Grade 3
Yes, Grade UNK
Unknown
Bronchial Stricture (Since last follow-up): If the recipient has been diagnosed with a bronchial stricture since the last follow-up, select Yes. If not, select No. If unknown, select Unk.
Note: If this is a 1-year follow-up, then report any new signs or symptoms since transplant.
If Yes, Stent: If the recipient has been diagnosed with a bronchial stricture, and stents have been inserted, select Yes. If not, select No. If unknown, select Unk.
Post Transplant Events: Indicate if each post transplant event was newly experienced by the patient during this follow-up period.
Drug Treated Hypertension: If the recipient has had any medication newly prescribed for the purpose of hypertension control since the last follow-up, select Yes. If not, select No. If unknown, select Unk. If the patient was taken off of hypertension medication but was then put back on the medication during this follow-up period, select Yes. If the patient has hypertension, but is not taking medication, select No. Also, if the patient has switched medications for hypertension, has added a medication to their hypertension regimen, or has changed their dosage, select No. This field is optional.
Bone Disease (Symptomatic): If the recipient has exhibited new signs and symptoms of bone disease since the last follow-up, select Yes. If not, select No. If unknown, select Unk. This field is optional.
Chronic Liver Disease: If the recipient has exhibited new signs and symptoms of chronic liver disease since the last follow-up, select Yes. If not, select No. If unknown, select Unk. This field is optional.
Cataracts: If the recipient has been newly diagnosed as having cataracts since the last follow-up, select Yes. If not, select No. If unknown, select Unk. This field is optional.
Diabetes Onset During the Follow-up Period: If the recipient has been newly diagnosed as having diabetes during this follow-up period, select Yes. If not, select No. If unknown, select Unk. If the patient is not newly diagnosed with diabetes but has newly become insulin dependent for their diabetes, then answer Yes to this question. This field is optional.
Note: If this is a 1-year follow-up, then report any new signs or symptoms since transplant.
Diabetes: If yes, Insulin Dependent: If the recipient has started insulin since the last follow-up, select Yes. If not, select No. If unknown, select Unk.
Note: The Diabetes: If Yes, Insulin Dependent field can only be edited on the patient's 1-year TRF. To correct this information on a 1-year TRF, access this record and enter the correct date. The corrected information will automatically update on the subsequent records.
Renal Dysfunction: If the recipient has been newly diagnosed or developed signs and symptoms of renal dysfunction during this follow-up period, select Yes. If not, select No. If unknown, select Unk.
If Yes, Creatinine > 2.5 mg/dl: If the recipient's creatinine level is greater than 2.5 mg/dl during this follow-up period, select Yes. If not, select No. If unknown, select Unk.
Chronic Dialysis: If the recipient has had chronic peritoneal or hemodialysis during this follow-up period, select Yes. If not, select No. If unknown, select Unk.
Renal Tx since Thoracic Tx: If the recipient has received a renal transplant during this follow-up period, select Yes. If not, select No. If unknown, select Unk.
Stroke: If the recipient experienced a stroke (CVA) during this follow-up period, select Yes. If not, select No. If unknown, select Unk. This field is optional.
Drug Treated Hyperlipidemia: If the recipient has had any medication newly prescribed for the purpose of lowering serum lipid levels, select Yes. If not, select No. If unknown, select Unk. If the patient was taken off of medication but was then put back on the medication during this follow-up period, select Yes. If the patient has hyperlipidemia but is not taking medication, select No. Also, if the patient has switched medications for hyperlipidemia, has added a medication to their hyperlipidemia regimen, or has changed their dosage, select No. This field is optional.
Did patient have any acute rejection episodes during the follow-up period: If the recipient experienced at least one episode during this follow-up period, select Yes. If not, select No. If unknown, select Unknown. If Yes is selected, indicate if a biopsy was done to confirm acute rejection. (List of Any Acute Rejection Episodes codes)
Note: If this is a 1-year follow-up, then report any new signs or symptoms since transplant.
Yes, at least one episode treated with anti-rejection agent
Yes,
none was treated with additional anti-rejection agent
No
Unknown
Was Biopsy done to confirm acute rejection: If the recipient had an acute kidney rejection episode, indicate whether biopsy confirmed acute rejection by selecting Yes. If a biopsy was not done, select Biopsy not done. If unknown, select Unknown. (This field is optional.) (List of Biopsy Confirmed codes)
Biopsy not done
Yes, rejection confirmed
Yes, rejection
not confirmed
Unknown
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 Pre-transplant 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.
Note: If no information is available about the malignancy except the fact that they were treated, contact the UNet Help Desk. They will work with the DMS department to have the Post Transplant Malignancy record validated.
Treatment
Biological or Anti-viral Therapy: If biological or anti-viral therapy is being administered to the recipient, select Yes. If not, select No. If unknown or can't disclose, select Unknown/Cannot Disclose. If Yes is selected, check all that apply. If a therapy, other than those listed, was administered, select Other, Specify and enter the therapy in the space provided. These fields are optional. (List of Anti-viral Treatment codes)
Acyclovir (Zovirax)
Cytogam
(CMV)
Gamimune
Gammagard
Ganciclovir
(Cytovene)
Valgancyclovir (Valcyte)
HBIG (Hepatitis B
Immune Globulin)
Flu Vaccine (Influenza Virus)
Lamivudine
(Epivir) (for treatment of Hepatitis B)
Valacyclovir
(Valtrex)
Other, Specify
Other Therapies: If the recipient received other therapies, select Yes. If not, select No. If Yes is selected, check all that apply: (These fields are optional.) (List of Other Therapies codes)
Photopheresis
Plasmapheresis
Total Lymphoid Irradiation
(TLI)
Note: If the recipient was removed from the waiting list with a code 21, indicating the recipient died during the transplant procedure, select No for all Biologicals or Anti-viral.
Immunosuppressive Information
Previous Validated Maintenance Follow-up Medications: The follow-up Immunosuppression medication(s) indicated in the patient's most recently validated Transplant Recipient Registration (TRR) or Transplant Recipient Follow-up (TRF) record will be listed.
Note: If a drug cannot be indicated as Maintenance in the Transplant Recipient Registration (TRR), then it cannot be indicated as Current Maintenance or Previous Maintenance in the TRF. If the drug cannot be indicated as Anti-rejection in the TRR, then it cannot be indicated as Anti-rejection in the TRF.
Were any medications given during the follow-up period for maintenance: (List of Changes to Maintenance Medications codes)
Note: If this is a 1-year follow-up, then report any new signs or symptoms since transplant.
If there have been no changes in medications during this follow-up period, select Yes same as previous validated report. The immunosuppressive medications selected as Current on the previous validated report will automatically be checked off in the Previous and Current columns of this follow-up record.
If there have been changes in medications during this follow-up period, select Yes, but different than previous validated report. Then select the appropriate Immunosuppressive Medications by placing a checkmark in the Current Maint or AR column.
If no medications were given during this follow-up period, select None given.
Note: If any medications were given during the 6-month follow-up period for maintenance, immunosuppression medications from the patient's validated TRR will be listed.
Did the physician discontinue all maintenance immunosuppressive medications: If the physician discontinued the patients immunosuppressive medications, select Yes. If the patient stopped the medications themselves or they were stopped for some other reason, select No.
Did the patient participate in any clinical research protocol for immunosuppressive medications: If the recipient participated in clinical research, select Yes. If not, select No. If Yes is selected, enter the details in the space provided. This field is optional.
Immunosuppressive Medications
For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint), Current Maintenance (Curr Maint) or Anti-rejection (AR) to indicate all medications that were prescribed for the recipient during this follow-up period, and for what reason. If a medication was not given, leave the associated box(es) blank.
Previous Maintenance (Prev Maint) includes all immunosuppressive medications given during the report period, which covers the period from the last clinic visit to the current clinic visit, for varying periods of time which may be either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Current Maintenance (Curr Maint) includes all immunosuppressive medications given at the time of the current clinic visit to begin in the next report period for varying periods of time which may be either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Note: If the recipient was taking maintenance medications during the follow-up period but is now deceased, then select Yes, but different than previous validated report, and check-off all applicable medications in the Previous column only. Do not check-off any medications in the Current column.
Note: On Recipient Death (RD) records, any maintenance medications given during the follow-up period should be noted as Previous, and nothing should be noted in the Current column.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode since the last clinic visit (e.g., Methylprednisolone, Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (e.g., from Tacrolimus to Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs should not be listed under AR immunosuppression, but should be listed under maintenance immunosuppression.
Note: The Anti-rejection field refers to any anti-rejection medications since the last clinic visit, not just at the time of the current clinic visit.
Note: As further clarification, drugs that are used with the intention to maintain recipients long-term are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate Mofetil and Prednisone. These maintenance medications should not be listed as AR medications to treat acute rejection. When patients have a true acute rejection, they are given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in addition to the maintenance medications. These are the medications that should be selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new monoclonal antibodies), select Previous Maint, or Current Maint, or AR next to Other Immunosuppressive Medication field, and enter the full name of the medication in the space provided. Do not list non-immunosuppressive medications.
Other Immunosuppressive Medications
For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint), Current Maintenance (Curr Maint) or Anti-rejection (AR) to indicate all medications that were prescribed for the recipient during this follow-up period, and for what reason. If a medication was not given, leave the associated box(es) blank.
Previous Maintenance (Prev Maint) includes all immunosuppressive medications given during the report period, which covers the period from the last clinic visit to the current clinic visit, for varying periods of time which may be either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Current Maintenance (Curr Maint) includes all immunosuppressive medications given at the time of the current clinic visit to begin in the next report period for varying periods of time which may be either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Note: On Recipient Death (RD) records, any maintenance medications given during the follow-up period should be noted as Previous, and nothing should be noted in the Current column.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode since the last clinic visit (e.g., Methylprednisolone, Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (e.g., from Tacrolimus to Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs should not be listed under AR immunosuppression, but should be listed under maintenance immunosuppression.
Note: The Anti-rejection field refers to any anti-rejection medications since the last clinic visit, not just at the time of the current clinic visit.
Note: As further clarification, drugs that are used with the intention to maintain recipients long-term are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate Mofetil and Prednisone. These maintenance medications should not be listed as AR medications to treat acute rejection. When patients have a true acute rejection, they are given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in addition to the maintenance medications. These are the medications that should be selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new monoclonal antibodies), select Previous Maint, or Current Maint, or AR next to Other Immunosuppressive Medication field, and enter the full name of the medication in the space provided. Do not list non-immunosuppressive medications.
Investigational Immunosuppressive Medications
For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint), Current Maintenance (Curr Maint) or Anti-rejection (AR) to indicate all medications that were prescribed for the recipient during this follow-up period, and for what reason. If a medication was not given, leave the associated box(es) blank.
Previous Maintenance (Prev Maint) includes all immunosuppressive medications given during the report period, which covers the period from the last clinic visit to the current clinic visit, for varying periods of time which may be either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Current Maintenance (Curr Maint) includes all immunosuppressive medications given at the time of the current clinic visit to begin in the next report period for varying periods of time which may be either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Note: On Recipient Death (RD) records, any maintenance medications given during this follow-up period should be noted as Previous, and nothing should be noted in the Current column.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode since the last clinic visit (e.g., Methylprednisolone, Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (e.g., from Tacrolimus to Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs should not be listed under AR immunosuppression, but should be listed under maintenance immunosuppression.
Note: The Anti-rejection field refers to any anti-rejection medications since the last clinic visit, not just at the time of the current clinic visit.
Note: As further clarification, drugs that are used with the intention to maintain recipients long-term are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate Mofetil and Prednisone. These maintenance medications should not be listed as AR medications to treat acute rejection. When patients have a true acute rejection, they are given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in addition to the maintenance medications. These are the medications that should be selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new monoclonal antibodies), select Previous Maint, or Current Maint, or AR next to Other Immunosuppressive Medication field, and enter the full name of the medication in the space provided. Do not list non-immunosuppressive medications.
Drug Codes (List of Drug Codes)
Sandimmune (Cyclosporine A)
Neoral (CyA-NOF)
Prograf
(Tacrolimus, FK506)
Sirolimus (RAPA, Rapamycin,
Rapamune)
Leflunomide (LFL, Arava)
Azathioprine (AZA,
Imuran)
CellCept (Mycophenolate Mofetil, MMF)
Cyclophosphamide
(Cytoxan)
Methotrexate (Folex, PFS, Mexate-AQ, Rheumatrex)
Atgam
(ATG)
OKT3 (Orthoclone, Muromonab)
Thymoglobulin
Zenapax
- Daclizumab
Simulect - Basiliximab
Gengraf (Abbott
Cyclosporine)
Everolimus (RAD, Certican)
EON (Generic
Cyclosporine)
Myfortic (Mycophenolate Sodium)
Other generic
Cyclosporine, specify brand:
Steroids
(Prednisone,Methylprednisolone,Solumedrol,Medrol,Decadron)
Campath
- Alemtuzumab (anti-CD52)
FTY 720
Rituximab
Modified
Release Tacrolimus FK506E (MR4)
Generic Tacrolimus (Generic
Prograf)
Generic MMF (Generic CellCept)
Other
Immunosuppressive Medication, Specify
Other Immunosuppressive
Medication, Specify
| File Type | application/msword |
| File Title | TRF - Thoracic |
| Author | pritchdh |
| Last Modified By | Darcy |
| File Modified | 2010-08-30 |
| File Created | 2010-08-30 |