Form 20b Kidney/Pancreas Pediatric Follow-up

Records
Pediatric Kidney-Pancreas 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

If Retransplanted, choose organ(s):

j Kidney n
k
l
m
n
j Kidney/Pancreas
k
l
m
j Pancreas n
k
l
m

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

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)

Cognitive Development:

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

Is growth hormone therapy used during this follow-up period:

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

Urine Protein Found By Any Method:

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

Bone Disease:
Fracture in the past year (or since last follow-up):

Specify Location and number of fractures:

AVN (avascular necrosis):

Kidney Graft Status:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m
c Spine-compression fracture
d
e
f
g

# of fractures:

c Extremity
d
e
f
g

# of fractures:

c Other
d
e
f
g

# of fractures:

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

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.
If Functioning, Most Recent Serum Creatinine:

Kidney Date of Failure:
Kidney Primary Cause of Graft Failure:
Specify
Contributory causes of graft failure:

mg/dl

St=

Kidney Acute Rejection

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

Kidney Chronic Rejection

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

Kidney Graft Thrombosis

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

Kidney Infection

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

Urological Complications

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

Recurrent Disease:

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

BK (Polyoma) Virus

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

Kidney Other Contributory Cause of Graft Failure

j NO
k
l
m
n
j YES, RESUMED MAINTENANCE DIALYSIS
k
l
m
n
Dialysis Since Last Follow-Up:

j YES, NO MAINTENANCE RESUMPTION
k
l
m
n
j YES, MAINTENANCE RESUMPTION UNKNOWN
k
l
m
n
j UNKNOWN
k
l
m
n

Date Maintenance Dialysis Resumed:
Select a Dialysis Provider:
Provider #:
Provider Name:

Pancreas Graft Status:

j Functioning n
k
l
m
n
j Partial Function n
k
l
m
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.

c Insulin
d
e
f
g
Method of blood sugar control:

c Oral medication
d
e
f
g
c Diet
d
e
f
g
c No Treatment
d
e
f
g

Date insulin/medication resumed:
Pancreas Date of Failure
Pancreas Graft Removed:

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

Date Pancreas Removed:
Pancreas Primary Causes of Graft Failure
Specify:
Contributory causes of graft failure:
Pancreas Graft/Vascular Thrombosis

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

Pancreas Infection

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

Pancreas Bleeding

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

Anastomotic Leak

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

Pancreas Rejection: Acute

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

Pancreas Chronic Rejection

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

Biopsy Proven Isletitis

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

Pancreatitis

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:

Conv. From Bladder to Enteric Drain Performed:

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

Enteric Drain Date:

Serum Amylase:

u/L

St=

Pancreas Transplant Complications (Not leading to graft failure):
Pancreatitis

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

Anastomotic Leak

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

Abcess or Local Infection

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

Other, Specify:

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

j Yes, at least one episode treated with anti-rejection agent
k
l
m
n
Did patient have any pancreas 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

j Positive
k
l
m
n
CMV IgG:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n

CMV IgM:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
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
If Yes, check all that apply:

c Valgancyclovir (Valcyte)
d
e
f
g
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:

Treatment for BK (polyoma) virus:

j YES n
k
l
m
n
j NO
k
l
m
c Yes, Immunosuppression reduction
d
e
f
g
c Yes, Cidofovir
d
e
f
g

If Yes, check all that apply:

c Yes, IVIG
d
e
f
g
c Yes, Type Unknown
d
e
f
g
c Yes, Other, Specify
d
e
f
g

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