Living Donor Follow-up Instructions

Living Donor Fol Help.pdf

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

Living Donor Follow-up Instructions

OMB: 0915-0157

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Living Donor 6-Month/Annual Follow-Up
Living Donor 6-Month/Annual Follow-up (LDF) records are generated at 6 months and 1 year
following the transplant event. The Living Donor Follow-up record is to be completed by the
transplant center responsible for follow-up of the living donor at intervals of six months, and one
year. The record is to contain only the requested patient information which has been obtained
since the last follow-up period; it should not contain information pertaining to the previous or
next follow-up period. For example, information provided in the 6-month follow-up should be
accurate for the period between discharge and 6 months post-donation.
Note: If the procedure was aborted, and the organ was not recovered, an LDF record will not
generate.
Note: Living Donor Follow-up records are only applicable to transplant dates after UNet's
rollout date (10/25/99).
View OPTN/UNOS Policy on Data Submission Requirements for additional information.
To correct information that is already displayed in an electronic record, call 1-800-978-4334.
Provider Information
Recipient Center: The recipient center information, reported in the Living Donor Registration
record, will display. Verify the transplant center name and the center code, and the provider
number, the 6-character Medicare identification number of the hospital that performed the living
donor transplant, is correct.
Followup Center: The follow-up center information, reported in the Living Donor Registration
record, will display. Verify the center name, center code and provider number for the center
following the living donor is correct.
Donor Information
Name: Verify the donor's name is correct. If the information is incorrect, corrections may be
made in the donor's Living Donor Feedback record.
DOB: Verify the displayed date is the donor's date of birth. If the information is incorrect,
corrections may be made in the donor's Living Donor Feedback record.
SSN: Verify the donor's social security number is correct. If the information is incorrect, contact
the UNetSM Help Desk at 1-800-978-4334.
Gender: The donor's gender, reported in the Living Donor Registration record, will display. If
the information is incorrect, corrections may be made in the donor's Living Donor Feedback
record.
Donor ID: The donor ID number, reported in the Living Donor Registration record, will display.
Each living donor is assigned a unique donor identification number at the time OPTN/UNOS is
notified a living donor transplant has occurred. This ID number corresponds to the date the
donor information was entered into the OPTN/UNOS computer system.
Recovery Date: The recovery date, reported in the Living Donor Registration record, will
display. Verify the date the organ recovery surgery occurred is correct.
Organ: The organ(s) recovered from the donor, reported in the Living Donor Feedback, will
display. Verify the organ(s) displayed is/are the organ(s) recovered from this donor.
Previous Status Date: The status date, reported on the donor's previously validated record,
will display.
Donor Status

Date of Initial Discharge: The date the donor was initially released to go home, reported in the
donor's most recently validated Living Donor Registration (LDR) record, will display. The
donor's hospital stay includes total time spent in different units of the hospital, including medical
and rehab.
Date: Last Contact or Death: Enter the date the donor was last contacted or their date of
death using the standard 8-digit numeric format of MM/DD/YYYY. The follow-up records (6month, 1 year) are to be completed within 30 days of the 6-month and year anniversary of the
organ recovery date. If the donor died, and you have not completed an interim follow-up
indicating this event, the 6-month or annual follow-ups should be completed indicating the
event.
Most Recent Donor Status: If the donor is living at the time of the follow-up visit, select the
appropriate Living entry. If the donor died during this follow-up period or you are completing an
interim follow-up, select Dead. Select the appropriate Lost entry in an interim follow-up if the
donor has left the country or his/her location is unknown by your institution, and it is unknown if
the donor is alive.
Living: Donor seen at transplant center
Living: Donor status update by phone or email correspondence between transplant
center and donor
Living: Donor status update by other health care facility
Living: Donor status update via other source (e.g. recipient)
Living: Donor contacted, declined follow-up with transplant center
Dead
Lost: No attempt to contact
Lost: Unable to contact donor – document attempts to collect
Cause of Death: If the Donor Status is Died, select the cause of death. If Other Specify is
selected, enter the cause of death in the space provided.
Other Cause
Infection: Donation/Surgery Related
Infection: Not Donation/Surgery Related
Pulmonary Embolism
Malignancy
Domino Liver Donor-Transplant Related Death (Liver donors only)
Cardiovascular
CVA
Hemorrhage: Donation/Surgery Related
Hemorrhage: Not Donation/Surgery Related
Homicide
Suicide
Accidental
Other, specify
Donation Related
Functional Status: Select the choice that best describes the donor's functional status during
the donor's 6-month/annual follow-up period. If reporting the donor's death, select the choice
that best describes the donor's functional status just prior to death. 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
Physical Capacity: Select the choice that best describes the donor's physical capacity during
the donor's 6-month/annual follow-up period. If reporting the donor's death, select the choice
that best describes the donor's physical capacity just prior to death.
No Limitations
Limited Mobility
Wheelchair bound or more limited
Unknown
Working for income: (Complete for donors 19 years of age or older.) If the donor was working
for income during the donor's 6-month/annual follow-up period, select Yes. If not, select No. If
unknown, select Unk. If reporting the donor's death, indicate if the donor was working for
income just prior to death.
If Yes: If Yes is selected, indicate the donor's working status.
Working Full Time
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 Donor Choice
Working Part Time Reason Unknown
Working, Part Time vs. Full Time Unknown
If No, Not Working Due To: If No is selected, indicate the reason why the donor is not
working at the time of listing.
Disability - A physical or mental impairment that interferes with or prevents a donor
from working (e.g. arthritis, mental retardation, cerebral palsy, etc).
Insurance Conflict - Any differences between a donor 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.)
Donor Choice - Homemaker - A donor who chooses to manage their own household,
instead of performing work for pay.
Donor Choice - Student Full Time/Part Time - A donor who is enrolled and/or
participating in college.

Donor Choice - Retired - A donor who no longer has an active working life such as an
occupation, business or office job.
Donor Choice - Other - Any reason not listed above that would prevent a donor from
working.
Unknown
Clinical Information
This section will display for all living donors.
Current Weight: Enter the donor's current weight in pounds or kilograms. If the donor's weight
is not available, select the status from the ST field (N/A, Not Done, Missing, Unknown).
Were any of the following procedures performed since [date of the most recently
reported patient status]: Indicate whether a CAT Scan, MRI or Ultrasound was performed
since the last follow-up record was submitted.
Cat Scan: If a scan was performed, select Yes, Normal Results or Yes, Specify Results.
If a scan was not performed, select Not Done. If unknown, select Unknown. If Yes,
Specify Results is selected, enter the results in the space provided.
MRI: If an MRI was performed, select Yes, Normal Results or Yes, Specify Results. If an
MRI was not performed, select Not Done. If unknown, select Unknown. If Yes, Specify
Results is selected, enter the results in the space provided.
Ultrasound: If an Ultrasound was performed, select Yes, Normal Results or Yes, Specify
Results. If an Ultrasound was not performed, select Not Done. If unknown, select
Unknown. If Yes, Specify Results is selected, enter the results in the space provided.
Liver Clinical Information
This section will only display for liver donors.
Most Recent Values: Enter the most recent values during the 6-month/annual follow-up period
for the tests listed below.
Total Bilirubin: Enter the lab value for total serum bilirubin in mg/dl. If the value are
unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown).
SGOT/AST: Enter the lab value for the serum glutamic oxaloacetic transaminase or
aspartate transaminase in U/L. If the value are unavailable, select the status from the ST
field (N/A, Not Done, Missing, Unknown).
SGPT/ALT: Enter the lab value for the Serum Glutamic Pyruvic Transaminase/Alanine
Aminotransferase in U/L. If the value are unavailable, select the status from the ST field
(N/A, Not Done, Missing, Unknown).
Alkaline Phosphatase: Enter the lab value for the serum alkaline phosphatase value in
units/L. If the value are unavailable, select the status from the ST field (N/A, Not Done,
Missing, Unknown).
Serum Albumin: Enter the lab value for the serum albumin value in g/dl. If the value are
unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown).
Serum Creatinine: Enter the lab value for the serum creatinine value in mg/dl. If the value
are unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown).
INR: International Normalized Ratio. Enter the ratio of the prothrombin time (in seconds) to
the control prothrombin time (in seconds). If the value are unavailable, select the status
from the ST field (N/A, Not Done, Missing, Unknown).
Kidney Clinical Information

This section will only display kidney donors.
Most Recent Values: Enter the most recent values during the 6-month/annual follow-up period
for the tests listed below.
Serum Creatinine: Enter the lab value for the kidney donor's serum creatinine value in
mg/dl taken during the 6-month/annual follow-up period. If the value is not available, select
the appropriate ST field (N/A, Not Done, Missing, Unknown).
Blood Pressure Systolic: Enter the donor's systolic blood pressure during the 6-month/annual
follow-up period in the space provided. If the value is not available, select the status from the
ST field (N/A, Not Done, Missing, Unknown).
Blood Pressure Diastolic: Enter the donor's diastolic blood pressure during the 6month/annual follow-up period in the space provided. If the value is not available, select the
status from the ST field (N/A, Not Done, Missing, Unknown).
Donor Developed Hypertension Requiring Medication: If the donor developed hypertension
during the 6-month/annual follow-up period that required medication, select Yes. If not, select
No. If unknown, select Unk.
Urinalysis: Enter the donor's Protein-Creatinine Ratio or Urine Protein within the 6 weeks
after the donation. If Urine Protein data is available, select Positive, Negative, Unknown or
Not Done.
Maintenance Dialysis: (22 sessions in a 3-month period) If the donor was on maintenance
dialysis during the 6-month/annual follow-up period, select Yes. If the donor was not on
maintenance dialysis, select No. If unknown, select Unk.
If Yes, Date First Dialyzed: If the donor was on maintenance dialysis during the 6month/annual follow-up period, enter the date the donor first began dialysis using the
standard 8-digit numeric format of MM/DD/YYYY.
Diabetes: If the donor developed diabetes during the 6-month/annual follow-up period, select
Yes. If not, select No. If unknown, select Unk. If Yes is selected, indicate whether the
Treatment administered was Insulin, Oral Hypoglycemic Agent or Diet.
Lung Clinical Information
This section will only display lung donors.
Activity Level: Select, as appropriate, to indicate the donor's activity level during the 6month/annual follow-up period.
No change in activity level
Mild decrease in activity level
Moderate decrease in activity level
Severe decrease in activity level
Increase in activity level
Unknown
Chronic Incisional Pain: Indicate whether the donor experienced Mild, Moderate or Severe
chronic incisional pain during the 6-month/annual follow-up period. If unknown, select
Unknown.
Complications
Has the donor been readmitted since last report [date of the most recently reported
patient status]: If the donor has been readmitted to the hospital since the last report, select
Yes. If not, select No. If Yes, enter the Date of the First Readmission [since last report
date] and specify the Reason for first Readmission in the space provided. If unknown, select
UNK.

(KIDNEY):
Kidney Complications [date of the most recently reported patient status]: If the
donor experienced complications since the last report, select Yes. If not, select No. If
unknown, select UNK. If Yes is selected, indicate the type of complications. If Other
Specify is selected, enter the type of complication in the space provided.
Added to UNOS TX candidate waiting list
Other, Specify
(LIVER):
Liver Complications [date of the most recently reported patient status]: If the
donor experienced complications since the last report, select Yes. If not, select No. If
Yes is selected, indicate the type of complications. If Other, Specify is selected, enter
the complication in the space provided.
Bile Leak
Hepatic Resection
Abscess
Liver Failure
Added to UNOS TX candidate waiting list
Other, Specify
(OTHER ORGANS):
Complications [date of the most recently reported patient status]: If the donor
experienced complications since the last report, select Yes. If not, select No. If Yes is
selected, enter the type of complications in the space provided.
Recipient Information
The following information will only display when the donor relationship is not a paired
exchange or anonymous donation.
Name: The recipient's name, reported on the Recipient and Living Donor Feedback, will
display. Verify recipient's name is correct.
SSN: The recipient's social security number, reported on the Recipient and Living Donor
Feedback, will display. Verify the recipient's social security number is correct.


File Typeapplication/pdf
File TitleLiving Donor Follow-Up
Authorpritchdh
File Modified2007-03-23
File Created2007-03-23

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