Table 7.
Quality-of-life parameters
| Parameter and age at prophylaxis start, years | Current age, years |
|||
|---|---|---|---|---|
| 12−16 | 17−21 | 22−26 | 27−35 | |
| Pain total score | ||||
| <2 (primary), n | 2 | 7 | 9 | 4 |
| Median (range) | 1.0 (0−2) | 0.0 (0−3) | 0.0 (0−37) | 0.0 (0−2) |
| 2 to <6 (secondary), n | 4 | 7 | 5 | 6 |
| Median (range) | 0.0 (0−10) | 1.0 (0−12) | 5.0 (0−21) | 0.5 (0−10) |
| 6 to <12 (secondary), n | − | 12 | 12 | 3 |
| Median (range) | − | 2.0 (0−17) | 4.5 (0−27) | 2.0 (0−8) |
| 12 to18 (secondary), n | − | − | 7 | 14 |
| Median (range) | − | − | 7.0 (0−22) | 5.5 (0−16) |
| Never (on demand), n | − | 1 | 10 | 12 |
| Median (range) | − | 0.0 (0−0) | 6.0 (0−16) | 5.0 (0−12) |
| Haemo-QoL-A total score | ||||
| <2 (primary), n | 3 | 7 | 9 | 4 |
| Median (range) | 87.0 (62.3−95.6) | 89.2 (61.1−99.2) | 90.8 (66.4−95.4) | 92.7 (86.5−98.6) |
| 2 to <6 (secondary), n | 4 | 7 | 5 | 6 |
| Median (range) | 82.6 (70.4−93.3) | 92.9 (81.1−99.7) | 89.2 (72.7−89.7) | 93.7 (78.8−99.5) |
| 6 to <12 (secondary), n | − | 11 | 12 | 3 |
| Median (range) | − | 94.4 (48.9−98.5) | 79.5 (44.3−89.7) | 93.6 (84.1−99.1) |
| 12 to 18 (secondary), n | − | − | 7 | 14 |
| Median (range) | − | − | 74.3 (57.4−98.5) | 83.9 (61.7−97.0) |
| Never (on demand), n | − | 1 | 10 | 12 |
| Median (range) | − | 89.2 (89.2−89.2) | 62.1 (42.4−80.9) | 75.2 (37.3−84.8) |