Disease-related complications
| . | Era A . | Era B . | Era C . | Era D . | ||||
|---|---|---|---|---|---|---|---|---|
| <1958 . | 1958-1975 . | 1976-1982 . | 1983-1992 . | |||||
| Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | |
| Total N | 688 | 843 | 1542 | 787 | 1121 | 427 | 1548 | 530 |
| Abnormal BMI (%)* | ||||||||
| Obese or overweight (BMI >25) | 48.7 | 73.5 | 52.1 | 69.5 | 49.1 | 56.4 | 44.1 | 50 |
| Underweight (BMI <18.5) | 4.1 | 0.4 | 3.4 | 1.5 | 5.5 | 0.2 | 2.8 | 1.3 |
| Employment and disability status | ||||||||
| Disabled | 45.9 | 12.9 | 37.8 | 14.7 | 15.9 | 3.5 | 5.8 | 1.9 |
| Employed/student | 31.2 | 49.5 | 53.1 | 74.5 | 68.6 | 86.4 | 79.6 | 87.6 |
| Retired | 18.3 | 31.7 | 0.4 | 0.5 | 0 | 0 | 0 | 0 |
| Other | 3.5 | 5.9 | 8.6 | 10.3 | 15.5 | 10.1 | 14.5 | 10.6 |
| Physical function (%) | ||||||||
| Limitation to overall activity level† | 68.8 | 21.1 | 49.4 | 16.3 | 25.9 | 6.6 | 14.9 | 4.3 |
| School/work absenteeism: >10 days missed | 6.9 | 2.6 | 8.5 | 5.2 | 10 | 5.6 | 5.6 | 3 |
| Assistive devices: Intermittent | 39.8 | 16 | 35.1 | 15.4 | 28.8 | 13.6 | 22.9 | 11.3 |
| Assistive devices: Always | 18.5 | 4.6 | 6.6 | 1.5 | 1.7 | 0 | 1.4 | 0.8 |
| Wheelchair: Intermittent | 18.6 | 5.5 | 9.5 | 2.8 | 6.2 | 2.8 | 4.3 | 1.7 |
| Wheelchair: Always | 9 | 0.7 | 4.2 | 0.1 | 1.7 | 0.2 | 0.8 | 0.8 |
| Bleeding complications (%) | ||||||||
| ≤2 joint bleeds in last 6 months | 45.8 | 97.2 | 38.1 | 92.9 | 41.3 | 92.0 | 51.7 | 94.7 |
| ≥5 joint bleeds in last 6 months | 42.6 | 1.7 | 48.8 | 4.3 | 46.6 | 3.8 | 35.5 | 3 |
| Target joint | 32.6 | 3.2 | 36.2 | 7.2 | 35.6 | 5.8 | 24.9 | 2.3 |
| . | Era A . | Era B . | Era C . | Era D . | ||||
|---|---|---|---|---|---|---|---|---|
| <1958 . | 1958-1975 . | 1976-1982 . | 1983-1992 . | |||||
| Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | |
| Total N | 688 | 843 | 1542 | 787 | 1121 | 427 | 1548 | 530 |
| Abnormal BMI (%)* | ||||||||
| Obese or overweight (BMI >25) | 48.7 | 73.5 | 52.1 | 69.5 | 49.1 | 56.4 | 44.1 | 50 |
| Underweight (BMI <18.5) | 4.1 | 0.4 | 3.4 | 1.5 | 5.5 | 0.2 | 2.8 | 1.3 |
| Employment and disability status | ||||||||
| Disabled | 45.9 | 12.9 | 37.8 | 14.7 | 15.9 | 3.5 | 5.8 | 1.9 |
| Employed/student | 31.2 | 49.5 | 53.1 | 74.5 | 68.6 | 86.4 | 79.6 | 87.6 |
| Retired | 18.3 | 31.7 | 0.4 | 0.5 | 0 | 0 | 0 | 0 |
| Other | 3.5 | 5.9 | 8.6 | 10.3 | 15.5 | 10.1 | 14.5 | 10.6 |
| Physical function (%) | ||||||||
| Limitation to overall activity level† | 68.8 | 21.1 | 49.4 | 16.3 | 25.9 | 6.6 | 14.9 | 4.3 |
| School/work absenteeism: >10 days missed | 6.9 | 2.6 | 8.5 | 5.2 | 10 | 5.6 | 5.6 | 3 |
| Assistive devices: Intermittent | 39.8 | 16 | 35.1 | 15.4 | 28.8 | 13.6 | 22.9 | 11.3 |
| Assistive devices: Always | 18.5 | 4.6 | 6.6 | 1.5 | 1.7 | 0 | 1.4 | 0.8 |
| Wheelchair: Intermittent | 18.6 | 5.5 | 9.5 | 2.8 | 6.2 | 2.8 | 4.3 | 1.7 |
| Wheelchair: Always | 9 | 0.7 | 4.2 | 0.1 | 1.7 | 0.2 | 0.8 | 0.8 |
| Bleeding complications (%) | ||||||||
| ≤2 joint bleeds in last 6 months | 45.8 | 97.2 | 38.1 | 92.9 | 41.3 | 92.0 | 51.7 | 94.7 |
| ≥5 joint bleeds in last 6 months | 42.6 | 1.7 | 48.8 | 4.3 | 46.6 | 3.8 | 35.5 | 3 |
| Target joint | 32.6 | 3.2 | 36.2 | 7.2 | 35.6 | 5.8 | 24.9 | 2.3 |
BMI was calculated from height and weight measurements taken by clinic staff. Based on this measure, each participant was categorized as underweight if BMI was <18.5, normal if 18.5 to 24.9, overweight if 25 to 29.9, and obese if BMI was ≥30.34
Limitation of activity used UDC definitions as included in the supplemental Methods. The degree of self-reported limitation of activity considered positive for this analysis included limitations of school/work activities or self-care activities or limitation requiring assistance for school/work/self-care and unable to participate in recreational activities.