Table 1 Demographic characteristics of the respondents
|  | Child respondents (n = 17) | Parent respondents (n = 27) |
|---|---|---|
Age (year) | 13.2 ± 5.5 | 40.0 ± 9.9 |
Gender | ||
 Male | 14 (82.4%) | 10 (37.0%) |
 Female | 3 (17.6%) | 17 (63.0%) |
Education | ||
 High school (or lower) |  | 15 (55.6%) |
 Bachelor (or equivalent) |  | 10 (37.0%) |
 Master (or higher) |  | 2 (7.4%) |
Underlying diseases/conditions of child participants | ||
 Beta-thalassemia | 7 (41.2%) | 10 (37.0%) |
 Hereditary factor VIII deficiency | 6 (35.3%) | 10 (37.0%) |
 Hereditary factor IX deficiency | 2 (11.8%) | 4 (14.8%) |
 Hereditary hemolytic anemia | 1 (5.9%) | 1 (3.7%) |
 Embolism and thrombosis of vena cava | 0 (0.0%) | 2 (7.4%) |
 Chronic myeloid leukemia | 1 (5.9%) | 0 (0.0%) |
Clinical phase | ||
 Phase 2 | 9 (52.9%) | 10 (37.0%) |
 Phase 2/3 | 1 (5.9%) | 2 (7.4%) |
 Phase 3 | 7 (41.2%) | 14 (51.9%) |
 Phase 4 | 0 (0.0%) | 1 (3.7%) |
Time from informed assent/consent of the pediatric drug trial to enrollment of this study (month) | 55.2 ± 14.1 | 47.7 ± 17.9 |