Form 17b Liver Pediatric Follow-up

Records
Pediatric Liver Transplant Recipient Follow-Up Worksheet
The revised worksheet sample is for reference purposes only and is pending OMB approval.
Note: These worksheets are provided to function as a guide to what data will be required in the online TIEDI
other data may be provided. Based on data provided through the online TIEDI
fields are not required in every case, they are not marked with a red asterisk.

B.

B.

application. Currently in the worksheet, a red asterisk is displayed by fields that are required, independent of what

application, additional fields that are dependent on responses provided in these required fields may become required as well. However, since those

Recipient Information
Name:

DOB:

SSN:

Gender:

HIC:

Tx Date:

Previous Follow-Up:

Previous Px Stat Date:

Transplant Discharge Date:
State of Permanent Residence:
Zip Code:

-

Provider Information
Recipient Center:
Followup Center:

Physician Name:
NPI:

j Transplant Center
k
l
m
n
Follow-up Care Provided By:

j Non Transplant Center Specialty Physician
k
l
m
n
j Primary Care Physician
k
l
m
n
j Other Specify
k
l
m
n

Specify:

Donor Information
UNOS Donor ID #:
Donor Type:

Patient Status
Date: Last Seen, Retransplanted or Death

j LIVING
k
l
m
n
Patient Status:

j DEAD
k
l
m
n
j RETRANSPLANTED
k
l
m
n

Primary Cause of Death:
Specify:

Contributory Cause of Death:
Specify:

Contributory Cause of Death:
Specify:

Hospitalizations:
Has the patient been hospitalized since the last patient status date:
Number of Hospitalizations:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m
St=

Noncompliance:
Was there evidence of noncompliance with immunosuppression
medication during this follow-up period that compromised the patient's
recovery:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Functional Status:

j Definite Cognitive delay/impairment (verified by IQ score <70 or unambiguous behavioral observation)
k
l
m
n
Cognitive Development:

j Probable Cognitive delay/impairment (not verified or unambiguous but more likely than not, based on
k
l
m
n
behavioral observation or other evidence)

j Questionable Cognitive delay/impairment (not judged to be more likely than not, but with some indication
k
l
m
n
of cognitive delay/impairment such as expressive/receptive language and/or learning difficulties)
j No Cognitive delay/impairment (no obvious indicators of cognitive delay/impairment)
k
l
m
n
j Not Assessed
k
l
m
n

j Definite Motor delay/impairment (verified by physical exam or unambiguous behavioral observation)
k
l
m
n
j Probable Motor delay/impairment (not verified or unambiguous but more likely than not, based on
k
l
m
n
behavioral observation or other evidence)
j Questionable Motor delay/impairment (not judged to be more likely than not, but with some indications of
k
l
m
n
motor delay/impairment)

Motor Development:

j No Motor delay/impairment (no obvious indicators of motor delay/impairment)
k
l
m
n
j Not Assessed
k
l
m
n

j Within One Grade Level of Peers
k
l
m
n
j Delayed Grade Level
k
l
m
n
j Special Education
k
l
m
n

Academic Progress:

j Not Applicable < 5 years old
k
l
m
n
j Status Unknown
k
l
m
n

j Full academic load
k
l
m
n
j Reduced academic load
k
l
m
n
j Unable to participate in academics due to disease or condition
k
l
m
n

Academic Activity Level:

j Not Applicable < 5 years old/ High School graduate
k
l
m
n
j Status Unknown
k
l
m
n

Primary Insurance at Follow-up:
Specify:

Clinical Information
Date of Measurement:
Height:

ft.

Weight:

lbs.

in.

cm

%ile

St=

kg

%ile

St=

kg/m2

BMI:

%ile

Pathology confirmed liver diagnosis at hospital discharge:
Specify:

Graft Status:

j Functioning n
k
l
m
n
j Failed
k
l
m

If death is indicated for the recipient, and the death was a result of some other factor unrelated to graft failure, select Functioning.
Date of Failure:
Contributory causes of graft failure:
Primary Graft Failure

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Vascular Thrombosis

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Hepatic arterial thrombosis

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Hepatic outflow obstruction

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Portal vein thrombosis

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Biliary Tract Complication:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Denovo Hepatitis

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Recurrent Hepatitis:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Recurrent Disease:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Acute Rejection:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Chronic Rejection:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Infection:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Patient Noncompliance:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Other, Specify:

Discharge Lab Data:
Lab Date:
Total Bilirubin:

mg/dl

St=

SGPT/ALT:

U/L

St=

Serum Albumin:

g/dl

St=

Serum Creatinine:

mg/dl

St=

INR (ratio):

St=

Most Recent Lab Data:
Lab Date:
Total Bilirubin:

mg/dl

St=

SGPT/ALT:

U/L

St=

Serum Albumin:

g/dl

St=

Serum Creatinine:

mg/dl

St=

INR (ratio):

Diabetes onset during the follow-up period:
Insulin dependent:

St=

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

j Yes, at least one episode treated with anti-rejection agent
k
l
m
n
Did patient have any acute rejection episodes during the follow-up
period:

j Yes, none treated with additional anti-rejection agent
k
l
m
n
j No
k
l
m
n
j Unknown
k
l
m
n
j Biopsy not done
k
l
m
n

Was biopsy done to confirm acute rejection:

j Yes, rejection confirmed
k
l
m
n
j Yes, rejection not confirmed
k
l
m
n
j Unknown
k
l
m
n

Postransplant Malignancy:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Donor Related:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Recurrence of Pre-Tx Tumor:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

De Novo Solid Tumor:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

De Novo Lymphoproliferative disease and Lymphoma:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Treatment
Biological or Anti-viral therapy:

j YES n
k
l
m
n
j NO n
k
l
m
j Unknown/Cannot disclose
k
l
m
c Acyclovir (Zovirax)
d
e
f
g
c Cytogam (CMV)
d
e
f
g
c Gamimune
d
e
f
g

c Gammagard
d
e
f
g
c Ganciclovir (Cytovene)
d
e
f
g
c Valgancyclovir (Valcyte)
d
e
f
g
If Yes, check all that apply:

c HBIG (Hepatitis B Immune Globulin)
d
e
f
g
c Flu Vaccine (Influenza Virus)
d
e
f
g
c Lamivudine (Epivir) (for treatment of Hepatitis B)
d
e
f
g
c Valacyclovir (Valtrex)
d
e
f
g
c Other, Specify
d
e
f
g

Specify:
Specify:

Other therapies:

j YES n
k
l
m
n
j NO
k
l
m
c Photopheresis
d
e
f
g

If Yes, check all that apply:

c Plasmapheresis
d
e
f
g
c Total Lymphoid Irradiation (TLI)
d
e
f
g

Immunosuppressive Information
Previous Validated Maintenance Follow-Up Medications:

j Yes, same as previous validated report
k
l
m
n
Were any medications given during the follow-up period for maintenance:

j Yes, but different than previous validated report
k
l
m
n
j None given
k
l
m
n

Did the physician discontinue all maintenance immunosuppressive
medications:

j YES n
k
l
m
n
j NO
k
l
m

Did the patient participate in any clinical research protocol for
immunosuppressive medications:

j YES n
k
l
m
n
j NO
k
l
m

Specify:

Immunosuppressive Medications
View Immunosuppressive Medications
Definitions Of Immunosuppressive Follow-Up 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 (example:
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 current clinic visit to begin in the next report 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 (example: Prednisone, Cyclosporine, Tacrolimus, Mycophenolate
Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode since the last clinic visit (example: Methylprednisolone,
Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (example: 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.
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.

Prev Maint

Curr Maint

AR

Steroids (Prednisone,Methylprednisolone,Solumedrol,Medrol,Decadron)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Atgam (ATG)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

OKT3 (Orthoclone, Muromonab)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Thymoglobulin

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Simulect - Basiliximab

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Zenapax - Daclizumab

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Azathioprine (AZA, Imuran)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

EON (Generic Cyclosporine)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Gengraf (Abbott Cyclosporine)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other generic Cyclosporine, specify brand:

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Neoral (CyA-NOF)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Sandimmune (Cyclosporine A)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Mycophenolate Mofetil (MMF, Cellcept, RS61443)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Tacrolimus (Prograf, FK506)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Modified Release Tacrolimus FK506E (MR4)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Sirolimus (RAPA, Rapamycin, Rapamune)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Myfortic (Mycophenolate Sodium)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other Immunosuppressive Medications
Prev Maint

Curr Maint

AR

Campath - Alemtuzumab (anti-CD52)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Cyclophosphamide (Cytoxan)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Leflunomide (LFL, Arava)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Methotrexate (Folex, PFS, Mexate-AQ, Rheumatrex)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other Immunosuppressive Medication, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other Immunosuppressive Medication, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Rituximab

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Investigational Immunosuppressive Medications
Prev Maint

Curr Maint

AR

Everolimus (RAD, Certican)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

FTY 720

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g