Total (N = 37) Mean ± SD, median [P25; P75] or n (%) | Self-reported outcome (n = 20) Mean ± SD, median [P25; P75] or n (%) | Proxy-reported outcome (n = 17) Mean ± SD, median [P25; P75] or n (%) | p-value | |
---|---|---|---|---|
Boy’s age, years | 11.4 ± 3.6 | 13.6 ± 2.1 | 8.8 ± 3.1 | < 0.001 |
Type of haemophilia | 0.609 | |||
Haemophilia A | 33 (89.2) | 17 (85.0) | 16 (94.1) | |
Haemophilia B | 4 (10.8) | 3 (15.0) | 1 (5.9) | |
Clinical severity | 0.234 | |||
Mild haemophilia | 0 (0.0) | 0 (0.0) | 0 (0.0) | |
Moderate haemophilia | 3 (8.1) | 3 (15.0) | 0 (0.0) | |
Severe haemophilia | 34 (91.9) | 17 (85.0) | 17 (100.0) | |
Inhibitor status | 0.999 | |||
Previous inhibitor | 1 (2.7) | 1 (5.0) | 0 (0.0) | |
Current inhibitor | 2 (5.4) | 1 (5.0) | 1 (5.9) | |
Never had an inhibitor | 34 (91.9) | 18 (90.0) | 16 (94.1) | |
Boy’s age categories | < 0.001 | |||
4–7.9 years | 8 (21.6) | 0 (0.0) | 8 (47.1) | |
8–11.9 years | 10 (27.0) | 4 (20.0) | 6 (35.3) | |
12–17.9 years | 19 (51.4) | 16 (80.0) | 3 (17.6) | |
Proxy respondent for the boy | ||||
Mother | / | 12 (70.6) | ||
Father | / | 5 (29.4) | ||
Familial haemophilia | 0.157 | |||
Yes | 22 (59.5) | 14 (70.0) | 8 (47.1) | |
No (sporadic) | 15 (40.5) | 6 (30.0) | 9 (52.9) | |
BMI percentile | 24.1 [9.1; 38.9] | 28.5 [8.2; 46.2] | 23.2 [10.4; 35.1] | 0.479 |
Underweight (<5th percentile) | 7 (18.9) | 4 (20.0) | 3 (17.6) | |
Normal weight (5th–84th percentile) | 30 (81.1) | 16 (80.0) | 14 (82.4) | |
Proxy’s occupation | ||||
Works at home | 11 (64.7) | |||
Works outside home | 6 (35.3) | |||
Proxy’s highest diploma | ||||
Never went to school | 2 (11.8) | |||
Primary school | 13 (76.5) | |||
Secondary school | 1 (5.9) | |||
Graduate school | 1 (5.9) | |||
PedsQL total score | 59.2 ± 13.2 | 58.9 ± 16 | 59.6 ± 9.5 | 0.858 |
CHO-KLAT total score | 52.3 ± 9.4 | 51.3 ± 9.2 | 53.5 ± 9.8 | 0.491 |
HJHS total scorea | 16.0 [6.0; 23.0] | 18.5 [11.8; 22.8] | 15.0 [1.0; 23.5] | 0.425 |