20d Kidney-Pancreas Pediatric Transplant Recipient Follow Up

Records
Pediatric Kidney-Pancreas Transplant Recipient Follow-Up Worksheet
FORM APPROVED: O.M.B. NO. 0915-0157 Expiration Date: 10/31/2010
®

Note: These worksheets are provided to function as a guide to what data will be required in the online TIEDI application. Currently in the
worksheet, a red asterisk is displayed by fields that are required, independent of what other data may be provided. Based on data provided through
®

the online TIEDI application, additional fields that are dependent on responses provided in these required fields may become required as well.
However, since those fields are not required in every case, they are not marked with a red asterisk.

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 Pancreas n
k
l
m
j Kidney/Pancreas
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
k
l
m
n
j Probable Cognitive delay/impairment
k
l
m
n
Cognitive Development:

j Questionable Cognitive delay/impairment
k
l
m
n

j No Cognitive delay/impairment
k
l
m
n
j Not Assessed
k
l
m
n

j Definite Motor delay/impairment
k
l
m
n
j Probable Motor delay/impairment
k
l
m
n
Motor Development:

j Questionable Motor delay/impairment
k
l
m
n
j No 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/ High School graduate or GED
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 or GED
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

ST=

kg

ST=

kg/m2

BMI:

Urine Protein Found By Any Method:

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

Kidney 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.
Kidney Date of Failure:
Kidney Primary Cause of Graft Failure:
Specify
Contributory causes of graft failure:
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 UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

Kidney Other Contributory Cause of Graft
Failure
If Functioning, Most Recent Serum
Creatinine:

mg/dl

ST=

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

Pancreas Bleeding

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

Anastomotic Leak

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

Pancreas Rejection: Acute

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

Pancreas Chronic Rejection

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

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

Other, Specify:

ST=

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 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 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

Viral Detection:

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

Is growth hormone therapy used during this
followup period:

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

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:
Previous Validated Maintenance Follow-Up
Medications:

j Yes, same as validated TRR form
k
l
m
n
Were any medications given during the followup period for maintenance:

j Yes, same as previous validated report
k
l
m
n
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

CellCept (Mycophenolate Mofetil; MMF)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Generic MMF (Generic CellCept)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Prograf (Tacrolimus, FK506)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Generic Tacrolimus (Generic Prograf)

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

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

Other Immunosuppressive Medication, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

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