Table 1 Patient demographics and clinical characteristics
Characteristic | Pre-test | Main analysis | ||||||
|---|---|---|---|---|---|---|---|---|
GD1 (N = 3) | GD2 (N = 6) | GD3 (N = 7) | Overall (N = 16) | GD1 (N = 9) | GD2 (N = 13) | GD3 (N = 11) | Overall (N = 33) | |
Sex, n (%) | ||||||||
Male | 1 (33.3) | 2 (33.3) | 3 (42.9) | 6 (37.5) | 2 (22.2) | 8 (61.5) | 6 (54.5) | 16 (48.5) |
Female | 2 (66.7) | 4 (66.7) | 3 (42.9) | 9 (56.3) | 7 (77.8) | 5 (38.5) | 5 (45.5) | 17 (51.5) |
Not collected | 0 (0) | 0 (0) | 1 (14.3) | 1 (6.3) | 0 (0) | 0 (0) | 0 (0) | 0 (0) |
Age at diagnosis, years | ||||||||
Mean (SD) | 4.3 (1.5) | 1.0 (0.5) | 6.6 (6.6) | 4.1 (5.0) | 23.4 (16.9) | 0.6 (0.7) | 8.1 (7.5) | 9.3 (13.3) |
Median (min, max) | 4.0 (3.0, 6.0) | 1.0 (0.2, 1.5) | 3.0 (1.0, 18.0) | 1.8 (0.2, 18.0) | 24.0 (2.0, 60.0) | 1.0 (0, 2.0) | 5.0 (1.0, 24.0) | 3.0 (0, 60.0) |
Current age, years | ||||||||
Mean (SD) | 46.3 (3.5) | 9.0 (7.9) | 28.4 (18.1) | 24.5 (18.8) | 58.6 (18.5) | 10.0 (8.2) | 37.1 (16.9) | 32.3 (24.6) |
Median (min, max) | 46.0 (43.0, 50.0) | 7.5 (2.0, 23.0) | 32.0 (4.0, 57.0) | 23.5 (2.0, 57.0) | 63.0 (25.0, 89.0) | 9.0 (1.0, 31.0) | 38.0 (10.0, 58.0) | 31.0 (1.0, 89.0) |
Duration of GD, years | ||||||||
Mean (SD) | 42.0 (2.0) | 8.1 (7.9) | 21.9 (13.2) | 20.5 (15.7) | 56.6 (27.0) | 9.6 (8.1) | 34.6 (17.9) | 25.5 (23.2) |
Median (min, max) | 42.0 (40.0, 44.0) | 7.0 (0.7, 22.0) | 23.0 (2.3, 39.0) | 22.5 (0.7, 44.0) | 56.2 (25.0, 88.8) | 8.8 (0.7, 30.1) | 35.2 (9.8, 57.3) | 16.7 (0.7, 88.8) |
Not collected, n (%) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 5 (55.6) | 0 (0) | 2 (18.2) | 7 (21.2) |
Respondent, n (%) | ||||||||
Self | 3 (100) | 0 (0) | 4 (57.1) | 7 (43.8) | 9 (100) | 0 (0) | 8 (72.7) | 17 (51.5) |
Proxy | 0 (0) | 6 (100) | 3 (42.9) | 9 (56.3) | 0 (0) | 13 (100) | 3 (27.3) | 16 (48.5) |
Father | – | – | – | – | 0 (0) | 2 (15.4) | 0 (0) | 2 (6.1) |
Mother | – | – | – | – | 0 (0) | 11 (84.6) | 3 (27.3) | 14 (42.4) |