Table 2. Sociodemographic information of survey respondents.
| Adults ≥ 18 y N = 106 |
Children/Teenagers 10–17 y N = 21 |
Children (proxy version) | ||
|---|---|---|---|---|
| 6–9 y N = 11 |
1–5 y N = 8 |
|||
| Age | 43.49 (13.89) Md = 44 range: 18–74 |
14.00 (2.39) Md = 14 range: 10–17 |
7.73 (1.01) Md = 8 range: 6–9 |
3.38 (1.60) Md = 3.50 range: 1–5 |
| Education (completed level) | ||||
| Primary school (1st–4th grade) | 6 (5.7%) | 12 (57.1%) | – | – |
| Middle school (5th–9th grade) | 25 (23.6%) | 9 (42.9%) | – | – |
| High school (10th–12th grade) | 40 (37.7%) | – | – | – |
| College degree | 29 (27.3%) | – | – | – |
| Postgraduate degree | 5 (4.7%) | – | – | – |
| Marital status | ||||
| Single | 37 (34.9%) | – | – | – |
| Married | 61 (57.5%) | – | – | – |
| Divorced/separated | 4 (3.8%) | – | – | – |
| Widower | 1 (0.9%) | – | – | – |
| Professional status | ||||
| Student | 9 (8.4%) | 21 (100%) | 10 (90.9%) | – |
| Full or part-time job | 57 (53.7%) | – | – | – |
| Unemployed | 8 (7.5%) | – | – | – |
| Retired | 28 (26.4%) | – | – | – |
| Medical leave | 2 (1.9%) | – | – | – |
| If unemployed/retired/medical leave a | N = 38 | |||
| Due to hemophilia | 20 (52.6%) | – | – | – |
| Perceived impact of hemophilia on work b | N = 57 | |||
| No impact | 28 (49.1%) | – | – | – |
| Little impact | 17 (29.8%) | – | – | – |
| Some impact | 9 (15.8%) | – | – | – |
| High impact | 3 (5.3%) | – | – | – |
| Very high impact | 0 | – | – | – |
| Work/school/kindergarten absences due to hemophilia c |
N
= 66
28 (42.4%) |
N
= 21
12 (57.1%) |
N
= 10
8 (80.0%) |
N
= 7
6 (85.7%) |
| Number of days missed last year | 28.57 (55.67) Md = 15 range: 1–293 |
5.58 (4.46) Md = 3.5 range: 1–15 | 8.50 (9.20) Md = 4.5 range: 2–30 | 8.83 (10.76) Md = 4 range: 2–30 |
| Household income | ||||
| ≤ 530€ | 11 (10.4%) | 1 (4.8%) | 1 (9.1%) | 0 |
| 531€–1,060€ | 25 (23.6%) | 4 (19.0%) | 1 (9.1%) | 1 (12.5%) |
| 1,061€–2,120€ | 41 (38.8%) | 10 (47.6%) | 5 (45.5%) | 6 (75.0%) |
| ≥ 2,121€ | 13 (12.3%) | 2 (9.6%) | 2 (18.2%) | 0 |
| Decline to answer | 14 (13.2%) | 3 (14.3%) | 2 (18.2%) | 1 (12.5%) |
| Perceived impact of hemophilia on finances | ||||
| No impact | 44 (41.5%) | – | – | – |
| Little impact | 26 (24.5%) | – | – | – |
| Some impact | 16 (15.1%) | – | – | – |
| High impact | 8 (7.5%) | – | – | – |
| Very high impact | 8 (7.5%) | – | – | – |
Note: Continuous variables are presented as mean (SD), median (Md), and range. Categorical variables are presented as n (%).
a
Sample of participants reporting being unemployed, retired, or on medical leave.
b
Only assessed among participants who reported a full- or part-time job.
c
Number of participants reporting absences due to hemophilia. Only assessed among participants who were working/studying or going to kindergarten.