TABLE 1.
Demographic and clinical characteristics of the hemophilia study cohort
| Age cohorts, year | 18‐29 | 30‐40 | 41‐50 | >50 | Total |
|---|---|---|---|---|---|
| (N = 65) | (N = 51) | (N = 26) | (N = 50) | (N = 192) | |
| Type | |||||
| Hemophilia A | 60 (92.3) | 47 (92.2) | 22 (84.6) | 35 (70) | 164 (85.4) |
| Hemophilia B | 5 (7.7) | 4 (7.8) | 4 (15.4) | 15 (30) | 28 (14.6) |
| Factor level | |||||
| <1% | 45 (69.2) | 37 (72.5) | 18 (69.2) | 30 (60) | 130 (67.7) |
| 1%‐5% | 10 (15.4) | 5 (9.8) | 4 (15.4) | 7 (14) | 26 (13.5) |
| >5% | 9 (13.8) | 9 (17.6) | 4 (15.4) | 12 (24) | 34 (17.7) |
| Prophylaxis regimen | |||||
| Episodic (“on‐demand”) | 24 (36.9) | 27 (52.9) | 12 (46.1) | 22 (44) | 85 (44.3) |
| Primary prophylaxis | 25 (38.5) | 12 (23.5) | 1 (3.8) | 0 (0) | 38 (19.8) |
| Other prophylaxis | 16 (24.6) | 12 (23.5) | 13 (50) | 28 (56) | 69 (35.9) |
| Inhibitors | |||||
| Current inhibitor | 4 (6.1) | 2 (3.9) | 2 (7.7) | 1 (2) | 9 (4.7) |
| Past inhibitor | 8 (12.3) | 5 (9.8) | 2 (7.7) | 2 (4) | 17 (8.9) |
| Comorbid conditions | |||||
| HIV | 0 (0) | 2 (3.9) | 7 (29.9) | 11 (22) | 20 (10.4) |
| Prior or active hepatitis C virus | 0 (0) | 6 (11.8) | 7 (26.9) | 6 (12) | 19 (9.9) |
| Other comorbid conditions | 2 (3.1) | 12 (23.5) | 12 (46.1) | 30 (60) | 56 (29.2) |
| Medications (regularly) | |||||
| Nonsteroidal anti‐inflammatory drugs | 1 (1.5) | 2 (3.9) | 6 (23.1) | 3 (6) | 12 (6.3) |
| Opioid analgesics | 2(3.1) | 0 (0) | 2 (7.7) | 7 (14) | 11 (5.7) |
| Other analgesics (eg, acetaminophen) | 1 (1.5) | 1 (2) | 4 (15.4) | 18 (18.4) | 24 (12.5) |
| Reporting use of aids (eg, brace, splint, cane) | 10 (15.4) | 17 (33.3) | 6 (23.1) | 15 (30) | 48 (25) |
| Prior joint replacement | |||||
| Elbow | 0 (0) | 0 (0) | 0 (0) | 1 (2) | 1 (0.5) |
| Knee | 1 (1.5) | 5 (9.8) | 7 (26.9) | 22 (44) | 35 (18.2) |
| Ankle | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) |
| Hip | 0 (0) | 1 (2) | 1 (3.8) | 4 (8) | 6 (3.1) |
| Prior synovectomy | 14 (21.5) | 18 (35.3) | 12 (46.2) | 15 (30) | 59 (30.7) |
| Bleeds | |||||
| Reporting any bleeds in the 4 wk before study participation | 11 (16.9) | 10 (19.6) | 9 (34.6) | 10 (20) | 40 (20.8) |
| Reporting joint bleeds in the 12 months before study participation | 12 (18.5) | 12 (23.5) | 8 (30.8) | 9 (18) | 41 (21.4) |
| Employment status | |||||
| Student | 24 (36.9) | 1 (2) | 0 (0) | 0 (0) | 25 (13.0) |
| Employed | 36 (55.4) | 44 (86.3) | 22 (84.6) | 26 (52.0) | 128 (66.7) |
| Unemployed | 5 (7.7) | 5 (9.8) | 2 (7.7) | 7 (14.0) | 19 (9.9) |
| Retired | 0 (0) | 0 (0) | 2 (7.7) | 16 (32.0) | 18 (9.4) |
| Unknown | 0 (0) | 1 (2) | 0 (0) | 1 (2) | 2 (1.0) |
All values represent numbers and their associated percentage.
Note Episodic “on‐demand”: Treatment at the time of a bleed. Patient may be infusing factor from time to time before a risky activity to prevent bleeding. Primary prophylaxis: Factor infusions given regularly at least once a week to prevent bleeding and its consequences in a patient with no established joint disease—usually starting in the first or second year of life, before the third year, or after a spontaneous joint bleed. This option was selected for patients that have been on uninterrupted primary prophylaxis since childhood, as defined above. Any other prophylaxis: Factor infusions given regularly at least once a week in order to prevent bleeding. Bleeds: include both spontaneous and traumatic bleeds.