1. Thalassaemics Diary
A clinical record book for thalassaemia patients

2. Physical Examination
Growth Monitoring
&
Physical Examination
&
Growth Monitoring

3. Physical Examination Growth Monitoring
Date Skin Pallor Jaundice Edema Pulse BP Liver Spleen Height Weight Wt/Age Wt/Ht Ht/Age Doctor
Pigmen. cm cm cm kg Sign

5. Physical Examination Growth Monitoring
Date Skin Pallor Jaundice Edema Pulse BP Liver Spleen Height Weight Wt/Age Wt/Ht Ht/Age Doctor
Pigmen. cm cm cm kg Sign

7. Transfusion Treatment
Transfusion History
&
Transfusion History
&
Transfusion Treatment

8. Transfusion History
1. Transfusion started on............................................................................ 4. Usual Interval between transfusion........................................................
2. Total Number of transfusion so far......................................................... 5. Recommended blood product...............................................................
Pattern - Regular/Irregular 6. Reaction.................................................................................................
3. Pre tranfusional Hemoglobin level maintained on...........................gm 7. Any Special note....................................................................................
Transfusion Treatment
Date No. of Unit HCT Transfused Reaction Hemoglobin Hb Fall Interval Next Note
Blood Type Pure RBC Days Trans. & Sign
Unit Pre Post Observed % Expected Date
Amount ml/kg
Body Date Hb Date Hb
Weight

10. Transfusion Treatment
Date No. of Unit HCT Transfused Reaction Hemoglobin Hb Fall Interval Next Note
Blood Type Pure RBC Days Trans. & Sign
Unit Pre Post Observed % Expected Date
Amount ml/kg
Body Date Hb Date Hb
Weight

12. Iron Chelation
Schedule
Iron Chelation
Schedule

13. Iron Chelation Schedule
Desferal Deferasirox/Deferiprone
Date Presc. Infusion Total Conc. mg/ Vit. Infusions Compl- Tot. mg/kg/ Presc. Tab. Expec- Compl- Note Reaction
days Type gm/day % kg/ C iance gm/day day day/week consumed ted iance
day Presc. Expected Done
no./
week

15. Iron Chelation Schedule
Desferal Deferasirox/Deferiprone
Date Presc. Infusion Total Conc. mg/ Vit. Infusions Compl- Tot. mg/kg/ Presc. Tab. Expec- Compl- Note Reaction
days Type gm/day % kg/ C iance gm/day day day/week consumed ted iance
day Presc. Expected Done
no./
week

17. Clinical & Laboratory
Evaluation (Monthly)
Clinical & Laboratory
Evaluation (Monthly)

18. Clinical and Laboratory Evaluation (Monthly)
Complete Blood Count (CBC)
Date Hb gm TLCx1000 N% L% M% Platelet x 1000 HCT ANC Note

20. Clinical and Laboratory Evaluation (Monthly)
Complete Blood Count (CBC)
Date Hb gm TLCx1000 N% L% M% Platelet x 1000 HCT ANC Note

22. Clinical and Laboratory Evaluation
Renal Function
Body Iron Evaluation Liver Function Evaluation
Evaluation
Date Ferritin CRP ALT AST PT Glucose Total Bill. Urea Creatinine Docter’s Note

24. Clinical and Laboratory Evaluation
Renal Function
Body Iron Evaluation Liver Function Evaluation
Evaluation
Date Ferritin CRP ALT AST PT Glucose Total Bill. Urea Creatinine Docter’s Note

26. Clinical & Laboratory
Clinical & Laboratory
Evaluation (Yearly)
Evaluation (Yearly)

27. Clinical and Laboratory Evaluation (Yearly)
Virology
Hep B panel Hep C panel Bone Examination
Date HAV HBsAg Anti Anti Anti HBV Anti HCV Anti Anti HIV
IgM HBs HBc HBe DNA HCV RNA HBE (1+2)
lgM
ABD USG
Liver Biopsy Ophthalmology Examination Audiology Examination
Liver Iron concentration-
Histology

28. Clinical and Laboratory Evaluation (Yearly)
Endocrine Function Evaluation (Yearly)
Date Result of any special test indicated -
Test
T3
T4
TSH
Parathyroid
LH
FSH
Testosterone Vaccination-
Estrogen Vaccine Date Date Date Date
Hepatitis B
Progesterone
Pneumococcal
Estradiol
Meningococcal
OGTT (F / PP)
Bone Age Splenectomy
Done
Bone Density
Zn
Ca
P04

29. Doctors Note
Doctors Note

30. Doctor’s Note
Date Date

32. Doctor’s Note
Date Date

34. Chelation Calendar
Chelation Calendar

35. Chelation Calendar
Month 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
NOV
DEC
Use the above calender to keep a record of your chelation
For Example:
Use Red for Desferal days
Use Blue for Deferiprone days
Use Green for combination days
Use Orange for (Deferasirox)
Remember don’t cheat?
Adapted from: PATIENT held record final v3.doc, U.K. Thalassaemia Society

36. Clinical and Laboratory Evaluation
Bone Density Record (DEXA scan yearly from age 10)
Site of Bone DEXA DEXA Hormone Bisphosphonate
Date Spine bone mineral Hip bone mineral replacement treatment Comments
pain/fracture density (Z acore) density (Z acore) (Drug and dose)
treatment (Drug and dose)
Adapted from: PATIENT held record final v3.doc, U.K. Thalassaemia Society

37. Annual Summary Chart
Summary Chart
Annual

38. Annual Summary Chart
Mean Hb gm/dl Iron balance Ferritin
Year Age Total Mean Splene- Hb Mean Mean Clinical
Yrs Blood Req ctomy Fall In Out compl- ALT Note &
Pre Post Mean Min Max Mean
Units ml/ % iance Sign
kg/day Total mg/kg Total mg/kg/
mg /day mg day
Equations
Transfusion Treatment Chart Annual Summary Chart
Hb Post=Hb pre + Transfused amount of pure RBC Desferal Compliance = Infusion Done x 100
Average index of last six month Expected Infusion
Desferal Compliance = Capsul Taken x 100
Index=Transfused amount of pure RBC Expected Intake
(Hb post - Hb pre)
Observed Hb fall=(Previous Hb post - Hb pre) Annual Summary Chart
Transfusion Interval
Mean Hb= Hb pre + Hb post
% Hb fall=Observed Hb fall x 100 (number of Hb pre + number of Hb post)
Previous Hb post
Iron=Transfused amount of pure RBC x 1.16
Next Appointment=(Hb post - Hb pre desired) + Previous date of transfusion
Expected Hb fall
Iron out by Desferal= (Infusion number x sideruria)+
Hb fall expected=Post Hb - Hb pre desired Iron excerted with intensive chelation
Average 2.1 ml/kg is required to increase hemoglobin by 1gm/dl Excerted Iron by L1= (administration number x sideruria)
Prescribed daily mean administration

39. Rotation Chart for Subcutaneous
Infusion of Desferal
The Following figure shows suitable sites for subcutaneous desferal
infusion. Because of local reactions such as erythema, swelling and
induration, it is best to rotate the sites used for injection.
Photocopy this page to use the figure as many times as required. Put a
round mark around the site of infusion used and chose alternate site each
time.

40. Clinical & Laboratory
Evaluation Checklist
Clinical & Laboratory
Evaluation Checklist

41. Clinical and Laboratory Evaluation Checklist
Monthly Every 6 months Yearly
CBC Cardiac Evaluation Endocrine Function Evaluation
Cardiac Echo Free T4 & TSH
Every 6 month Parathyroid
EKG
FSH
Serum Iron Evalution Heart chamber dimensions LH
Ferritin Systolic function Testosterone
Estradiol
Iron Diastolic function OGTT
TIBC Fractional shortening Bone age and bone density
Zinc, Vit-C, Vit-E
As Required Yearly Complete physical examination Ophthamology
examination Audiology examination
Liver Function Evaluation Virology
As Indicated
ALT/SGPT Hepatitis C panel (anti-
As Indicated
AST/SGOT HCV,anti- HCV RIBA)
24 - hour Holter monitor
Alkaline Phosphatase Hepatitis B panel anti - HBc igM
Glucose anti - HBe
(HBsAg,anti-HBs,anti- HBeAg
Reanal Function Evaluation HBc lgG) anti-HDV
Urea HCV-RNA
anti-HIV 1+2
Creatinine

43. Copyright 2010 Thalasaemia Federation of Pakistan
All right reserved. This publication may not be reproduced nor copied for distribution,
in whole or in part, without the prior written permission of the Thalasaemia Federation of Pakistan
100 B, Iqbal Avenue Housing Society (opp. Shaukat Khanum Hospital)
Johar Town Lahore. Phone: 042-35181549, 35181749
Email: info@tfp.org.pk federation@thalassaemia.org.pk www.tfp.org.pk