Figure 1.
Demographic and medical data of participants*
| Participants (n=9) | ||
|---|---|---|
| DEMOGRAPHIC CHARACTERISTICS | ||
| Mean (SD) age, years | 33.1 (12.1) | |
| Family situation, n (%) | Married/Cohabiting | 5 (55.5) |
| Single | 4 (44.4) | |
| Education, n (%) | Elementary school | 1 (11.1) |
| Upper secondary school | 5 (55.5) | |
| College/University | 3 (33.3) | |
| CLINICAL CHARACTERISTICS | ||
| Treatment before switch, n (%) | Prophylaxis with SHL | 4 (44.4) |
| Prophylaxis with EHL | 5 (55.6) | |
| Mean (SD) duration of emicizumab treatment (weeks) | 47.3 (3.3) | |
| Emicizumab treatment regimen | Once weekly | 8 (88.9) |
| Every 2 weeks | 1 (11.1) | |
| Every 4 weeks | 0 | |
| Target joints at baseline, n (%) | 2 (22.2) | |
| Mean calculated ABR before switch (95% CI) | 10.0 (4.79–18.38) | |
| Mean calculated ABR after switch (95% CI) | 2.0 (0.25–7.27) | |
| Joint health (based on HEAD-US scores42) at baseline, n (%) | Healthy joints | 4 (44.4) |
| Synovitis | 4 (44.4) | |
| Synovitis only | 1 (11.1) | |
| Synovitis and OCD | 3 (33.3) | |
| OCD only | 1 (11.1) | |
Categories and sub-categories of participant responses
| CATEGORIES | SUB-CATEGORIES |
|---|---|
| Adapting to a new reality | Learning the new treatment |
| The treatment takes less time and space in life | |
| New difficulties and different pain | |
| A feeling of normality | Changed situation in professional life |
| New prerequisites for physical activity | |
| Hope for the future | |
| Shattered expectations | The disease persists |
| The difference may not be significant |