TABLE 1.
Characteristics of participants in the Hemophilia in the Netherlands studies obtained from questionnaire data
|
1972 (N = 447) |
1978 (N = 560) |
1985 (N = 935) |
1992 (N = 980) |
2001 (N = 1066) |
2019 (N = 1009) |
|
|---|---|---|---|---|---|---|
| Mean age in years (range) a | 21 (0–47) | 23 (0–70) | 27 (0–85) | 30 (0–84) | 35 (0–90) | 40 (0–88) |
| Severity of hemophilia (%) | ||||||
| Severe | 159 (36) | 245 (44) | 384 (41) | 387 (39) | 420 (39) | 378 (37) |
| Moderate | 83 (19) | 106 (19) | 175 (19) | 173 (18) | 176 (17) | 149 (15) |
| Mild | 172 (38) | 138 (25) | 376 (40) | 420 (43) | 470 (44) | 482 (48) |
| Type of hemophilia (%) b | ||||||
| Hemophilia A | 377 (84) | 481 (86) | 801 (86) | 853 (87) | 925 (87) | 867 (87) |
| Hemophilia B | 70 (16) | 79 (14) | 134 (14) | 127 (13) | 141 (13) | 129 (13) |
| Family history of hemophilia (%) c | ||||||
| Negative | 112 (25) | 128 (23) | 237 (25) | 195 (20) | 246 (23) | 168 (18) |
| Positive | 335 (75) | 432 (77) | 698 (75) | 785 (80) | 820 (77) | 753 (82) |
| HIV infection (%) d | ||||||
| Current infection | — | — | 36 (4) | 55 (8) | 29 (5) | 22/412 (5) e |
| Hepatitis C infection (%) f | ||||||
| Current infection | — | — | — | — | 344 (45) | 8/412 (2) g |
| Past infection | — | — | — | — | 97 (13) | 226/412 (55) g |
| Inhibitory antibodies (%) h | ||||||
| Ever inhibitors | — | — | 31/384 (8) | 51/388 (13) | 52/420 (13) | 66/361 (19) i |
| Current inhibitors | — | — | 19 (5) | 29 (7) | 15 (4) | 6/361 (2) i |
| Past inhibitors | — | — | 12 (3) | 22 (6) | 37 (9) | 60/361 (17) i |
Abbreviations: HCV, hepatitis C virus; HIV, human immunodeficiency virus.
a
Age was unknown for 8 patients.
b
Type of hemophilia was unknown for 13 patients.
c
Family history of hemophilia was unknown for 88 patients.
d
Reported for patients treated with coagulation factor before 1985.
e
HIV status was unknown for 4 patients.
f
Reported for patients treated with coagulation factor before 1992.
g
HCV status was unknown for 84 patients.
h
Reported for patients with severe hemophilia.
i
Inhibitor status was unknown for 17 patients.