Table 2. Mental health burden of HAE.
| Items | Total (n = 70) |
High (n = 19) |
Low (n = 29) |
No attack (n = 7) |
Asymptomatic (n = 7) |
Unclassified (n = 8) |
|---|---|---|---|---|---|---|
| Troubled with attacks | 11 | 7 | 3 | 1 | 0 | 0 |
| Mentally worried | 11 | 6 | 4 | 1 | 0 | 0 |
| Want access to self-injection, treatment at home | 10 | 7 | 3 | 0 | 0 | 0 |
| Raise awareness among doctors | 10 | 4 | 4 | 1 | 0 | 1 |
| Want access to a hospital that would offer treatment nearby | 9 | 5 | 3 | 1 | 0 | 0 |
| Want new products and formulations | 9 | 5 | 3 | 0 | 0 | 1 |
| Prophylactic use of Berinert or a drug that has preventive effect | 7 | 4 | 1 | 0 | 1 | 1 |
| Not enough information | 4 | 0 | 4 | 0 | 0 | 0 |
| Waiting time is too long | 6 | 3 | 2 | 0 | 0 | 1 |
| Supporting costs for genetic tests for family | 4 | 2 | 2 | 0 | 0 | 0 |
| Scared of going on trips | 5 | 1 | 4 | 0 | 0 | 0 |
| Concerned about the side effects of drugs | 4 | 1 | 2 | 1 | 0 | 0 |
| Wish to have no more attacks; Want a cure | 3 | 1 | 0 | 0 | 1 | 1 |
| Financial burden | 4 | 2 | 1 | 1 | 0 | 0 |
| Impact of treatment is unknown; Have unexplained symptoms | 3 | 0 | 3 | 0 | 0 | 0 |
| Cannot get my medication at a pharmacy | 1 | 0 | 1 | 0 | 0 | 0 |
| Burden on family | 1 | 0 | 1 | 0 | 0 | 0 |
| How to deal with throat swelling | 1 | 0 | 0 | 0 | 0 | 1 |
| A third-party counselor specializing in HAE | 1 | 0 | 0 | 0 | 1 | 0 |
| Nothing at this moment | 4 | 0 | 2 | 1 | 1 | 0 |
| No answer | 18 | 1 | 9 | 2 | 3 | 3 |
Abbreviation: HAE, Hereditary angioedema.