12 Thoracic Heart Lung Pediatric Transplant Recipient Follo

Records
Pediatric Thoracic 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

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=

Hospitalized for Rejection:

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

Hospitalized for Infection:

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

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

Functional Status:

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

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
Academic Progress:

j Special Education
k
l
m
n

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

j Full academic load
k
l
m
n
j Reduced academic load
k
l
m
n
Academic Activity Level:

j Unable to participate in academics due to disease or
k
l
m
n
condition
j Not Applicable < 5 years old/ High School graduate or
k
l
m
n
GED
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:

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

Graft Status:

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 Graft Failure:

j Primary Non-Function
k
l
m
n
j Acute Rejection
k
l
m
n

Primary Cause of Graft Failure:

j Chronic Rejection/Atherosclerosis
k
l
m
n
j Other, Specify
k
l
m
n
Other, Specify:

Graft Function:
Heart:
Ejection Fraction:

Shortening Fraction:

Pacemaker:

Coronary Artery Disease Since Last
Follow Up:

Clinically Significant Events:

ST=

%

ST=

%

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

Lung:
FeV1:

%

ST=

O2 Requirement at Rest:

L/min

ST=

j NO BOS
k
l
m
n
j Yes, Grade OP
k
l
m
n
j Yes, Grade 1
k
l
m
n
Bronchiolitis Obliterans
Syndrome:

j Yes, Grade 2
k
l
m
n
j Yes, Grade 3
k
l
m
n
j Yes, Grade UNK
k
l
m
n
j Unknown
k
l
m
n

Bronchial Stricture (Since last
follow-up):

If yes, Stent:

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

Post Transplant Events:
Drug Treated Hypertension:

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

Bone Disease (Symptomatic):

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

Chronic Liver Disease:

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

Cataracts:

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

Diabetes onset during the follow-up
period:

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

Diabetes: If Yes, Insulin Dependent:

Renal Dysfunction:

If Yes, Creatinine > 2.5 mg/dl:

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

Other therapies:

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

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 FollowUp Medications:
Previous Validated Maintenance FollowUp Medications:

j Yes, same as validated TRR form
k
l
m
n
Were any medications given during the
follow-up 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 Curr AR
Maint Maint
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

Prev
Maint

Curr
Maint

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

Investigational Immunosuppressive Medications

UNOS View Only
Comments:

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