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Characteristics of study participants, N = 286
| Characteristics | |
|---|---|
| Patient mean age (SD) | 11.2 (2.64) |
| Proxy mean age (SD) | 40.6 (7.95) |
| Disease group | |
| Beta thalassemia major | 68 (23.7%) |
| Hemophilia (severe) | 39 (13.6%) |
| Hemophilia (intermediate) | 15 (5.2%) |
| Acute Lymphoblastic Leukemia | 40 (14.0%) |
| Acutely ill | 124 (43.5%) |
| Relation to the patient | |
| Mother | 228 (79.4%) |
| Father | 41 (14.3%) |
| Elder sister/brother | 5 (1.7%) |
| Other relatives (e.g., grandparent) | 12 (4.2%) |
| Knows patient health, yes/no | 286 (100%) |
