Characteristics | N (%) |
---|---|
Age (years) (n = 368) | |
2–4.9 years old | 36 (9.78) |
5–7.9 years old | 62 (16.85) |
8–12.9 years old | 134 (36.41) |
13–18.9 years old | 136 (36.96) |
Gender (n = 368) | |
Male | 178 (48.37) |
Female | 190 (51.63) |
Ethnicity (n = 368) | |
Malay | 242 (65.85) |
Chinese | 44 (11.92) |
Kadazan-Dusun | 55 (14.91) |
Others | 27 (7.32) |
Region (n = 368) | |
Northern (Penang, Perak) | 43 (11.68) |
Central (Selangor, Federal Territory of Kuala Lumpur, Negeri Sembilan) | 76 (20.65) |
Southern (Johore) | 45 (12.23) |
East Coast (Pahang, Kelantan, Terengganu) | 104 (28.26) |
East Malaysia (Sabah, Sarawak) | 100 (27.17) |
Education Level of Parents who completed Proxy-Report (n = 257) | |
No Formal Education | 12 (4.67) |
Primary or Secondary School | 183 (71.20) |
Tertiary Education | 62 (24.12) |
Education Level of Children who completed Self-Report (n = 111) | |
No Formal Education | 3 (2.70) |
Primary or Secondary School | 97 (87.39) |
Tertiary Education | 11 (9.91) |
Source of survey (n = 368) | |
Self-reported | 111 (30.16) |
Parent Proxy-reported | 257 (69.84) |
Presence of Iron Overload Complication (n = 368) | |
Absent | 267 (72.56) |
Present | 101 (27.44) |
Endocrine Only | 57 (15.49) |
Liver Only | 24 (6.52) |
Cardiac Only | 3 (0.82) |
Multi-system | 20 (5.43) |
Iron Chelation Therapy Route of Administration (n = 368) | |
Subcutaneous Injection (SC) | 42 (11.41) |
Oral (PO) | 268 (72.83) |
Subcutaneous Injection (SC) + Oral (PO) | 58 (15.76) |
Iron Chelation Therapy (n = 368) | |
SC Desferrioxamine | 42 (11.41) |
PO Deferasirox | 233 (63.32) |
PO Deferiprone | 29 (7.88) |
SC Desferrioxamine + PO Deferiprone | 41 (11.14) |
SC Desferrioxamine + PO Deferasirox | 17 (4.62) |
PO Deferiprone + PO Deferasirox | 6 (1.63) |
Number of iron chelating agents (n = 368) | |
Monotherapy | 304 (82.61) |
Dual Therapy | 64 (17.39) |
History of Serious Adverse Event with Iron Chelation Therapy(n = 368) | |
No | 345 (93.75) |
Yes | 23 (6.25) |
Characteristics (N = 368) | Mean (SD) |
Age (years) | 10.59 (4.37) |
Age at first transfusion (years) | 2.66 (3.01) |
Number of years receiving blood transfusion | 7.68 (4.66) |