Table 1 Patients sociodemographic and clinical characteristics
Characteristics | Total (N = 585) |
|---|---|
Age in years, mean (SD) | 17.2 (5.4) |
Age at first transfusion in years, mean (SD) | 5.4 (7.9) |
Number of years receiving blood transfusion, mean (SD) | 11.3 (8.9) |
Source of survey (%) | Â |
 Self-reported | 332 (56.8) |
 Proxy-reported | 253 (43.2) |
Gender (%) | Â |
 Male | 259 (44.3) |
 Female | 326 (55.7) |
Ethnicity (%) | Â |
 Malay | 403 (68.9) |
 Chinese | 94 (16.1) |
 Kadazan-Dusun | 58 (9.9) |
 Others | 30 (5.1) |
Education level of proxy’s who completed proxy-report, n = 251 (%) |  |
 No formal education | 10 (4.0) |
 Primary or secondary education | 180 (71.7) |
 Tertiary education | 61 (24.3) |
Education level of patients who completed self-report, n = 331 (%) |  |
 No formal education | 3 (0.9) |
 Primary or secondary education | 207 (62.5) |
 Tertiary education | 121 (36.6) |
Presence of iron overload (IOL) complication (%) | Â |
 No complication | 331 (56.6) |
 One complication | 164 (28.0) |
 Two complications | 66 (11.3) |
 Three or more complications | 24 (4.1) |
 Cardiac disease | 39 (15.3*) |
 Diabetes | 20 (7.9*) |
 Hypothyroid | 25 (9.8*) |
 Hypogonadism | 90 (35.4*) |
 Hypoparathyroidism | 52 (20.5*) |
 Liver disease | 124 (48.8*) |
Iron chelation therapy (%) | Â |
 Desferrioxamine (subcutaneous (SC) drug) | 68 (11.6) |
 Deferasirox (oral (PO) drug) | 245 (41.9) |
 Deferiprone (oral (PO) drug) | 73 (12.5) |
 Desferrioxamine + Deferiprone (SC + PO drug) | 154 (26.3) |
 Desferrioxamine + Deferasirox (SC + PO drug) | 32 (5.8) |
 Deferiprone + Deferasirox (both oral drugs) | 13 (2.2) |
Number of iron chelating agents (%) | Â |
 Monotherapy | 386 (66.0) |
 Dual therapy | 199 (34.0) |
Route of iron chelating administration (%) | Â |
 Subcutaneous | 68 (11.6) |
 Oral | 331 (56.6) |
 Subcutaneous + Oral | 186 (31.8) |
History of serious adverse event with iron chelation therapy (%) | Â |
 Yes | 76 (13.0) |
 No | 509 (87.0) |