Table 7.
Reasons for discontinuation of LTP
| Overall (N = 225) | US (n = 56) | Canada (n = 51) | Germany (n = 45) | Australia (n = 35) | UK (n = 24) | Italy (n = 14) | |
|---|---|---|---|---|---|---|---|
| Patients who discontinued LTP | n = 76 | n = 26 | n = 25 | n = 4 | n = 15 | n = 6 | n = 0 |
| Intolerable adverse drug reaction(s) | 22 (28.9) | 4 (15.4) | 7 (28.0) | 0 | 7 (46.7) | 4 (66.7) | – |
| Medication not effective | 17 (22.4) | 3 (11.5) | 8 (32.0) | 1 (25.0) | 5 (33.3) | 0 | – |
| Discontinued access to medication | 10 (13.2) | 6 (23.1) | 1 (4.0) | 0 | 3 (20.0) | 0 | – |
| Inconvenient route of administration | 9 (11.8) | 6 (23.1) | 3 (12.0) | 0 | 0 | 0 | – |
| Fear of potential adverse drug reaction(s) | 8 (10.5) | 1 (3.8) | 7 (28.0) | 0 | 0 | 0 | – |
| Patient noncompliance | 3 (3.9) | 0 | 2 (8.0) | 0 | 1 (6.7) | 0 | – |
| Drug–drug interactions | 2 (2.6) | 0 | 0 | 2 (50.0) | 0 | 0 | – |
| Drug–concomitant disease interactions | 2 (2.6) | 0 | 0 | 0 | 2 (13.3) | 0 | – |
| Othera | 17 (22.4) | 4 (15.4) | 10 (40.0) | 1 (25.0) | 1 (6.7) | 1 (16.7) | – |
| Unknown | 7 (9.2) | 4 (15.4) | 1 (4.0) | 1 (25.0) | 0 | 1 (16.7) | – |
| Berinert® | n = 9 | n = 2 | n = 6 | n = 1 | n = 0 | n = 0 | – |
| Inconvenient route of administration | 2 (22.2) | 0 | 2 (33.3) | 0 | – | – | – |
| Medication not effective | 1 (11.1) | 1 (50.0) | 0 | 0 | – | – | – |
| Patient noncompliance | 1 (11.1) | 0 | 1 (16.7) | 0 | – | – | – |
| Othera | 5 (55.6) | 1 (50.0) | 3 (50.0) | 1 (100) | – | – | – |
| Cinryze® | n = 17 | n = 15 | n = 1 | n = 1 | n = 0 | n = 0 | – |
| Discontinued access to medication | 6 (35.3) | 6 (40.0) | 0 | 0 | – | – | – |
| Inconvenient route of administration | 6 (35.3) | 6 (40.0) | 0 | 0 | – | – | – |
| Medication not effective | 3 (17.6) | 2 (13.3) | 1 (100) | 0 | – | – | – |
| Othera | 1 (5.9) | 1 (6.7) | 0 | 0 | – | – | – |
| Unknown | 3 (17.6) | 2 (13.3) | 0 | 1 (100) | – | – | – |
| Danazol | n = 32 | n = 6 | n = 12 | n = 2 | n = 8 | n = 4 | – |
| Intolerable adverse drug reaction(s) | 17 (53.1) | 3 (50.0) | 6 (50.0) | 0 | 5 (62.5) | 3 (75.0) | – |
| Fear of potential adverse drug reaction(s) | 7 (21.9) | 1 (16.7) | 6 (50.0) | 0 | 0 | 0 | – |
| Medication not effective | 5 (15.6) | 0 | 3 (25.0) | 1 (50.0) | 1 (12.5) | 0 | – |
| Drug–drug interaction(s) | 2 (6.3) | 0 | 0 | 2 (100) | 0 | 0 | – |
| Discontinued access to medication | 2 (6.3) | 0 | 0 | 0 | 2 (25.0) | 0 | – |
| Inconvenient route of administration | 1 (3.1) | 0 | 1 (8.3) | 0 | 0 | 0 | – |
| Drug–concomitant disease interaction(s) | 1 (3.1) | 0 | 0 | 0 | 1 (12.5) | 0 | – |
| Othera | 9 (28.1) | 1 (16.7) | 7 (58.3) | 0 | 1 (12.5) | 0 | – |
| Unknown | 3 (9.4) | 1 (16.7) | 1 (8.3) | 0 | 0 | 1 (25.0) | – |
| Stanozolol | n = 6 | n = 2 | n = 1 | n = 0 | n = 3 | n = 0 | – |
| Intolerable adverse drug reaction(s) | 2 (33.3) | 1 (50.0) | 0 | – | 1 (33.3) | – | – |
| Discontinued access to medication | 2 (33.3) | 0 | 1 (100) | – | 1 (33.3) | – | – |
| Medication not effective | 1 (16.7) | 0 | 0 | – | 1 (33.3) | – | – |
| Drug–concomitant disease interaction(s) | 1 (16.7) | 0 | 0 | – | 1 (33.3) | – | – |
| Unknown | 1 (16.7) | 1 (50.0) | 0 | – | 0 | – | – |
| Oxandrolone | n = 1 | n = 0 | n = 0 | n = 0 | n = 1 | n = 0 | – |
| Medication not effective | 1 (100) | – | – | – | 1 (100) | – | – |
| Tranexamic acid | n = 10 | n = 0 | n = 5 | n = 0 | n = 3 | n = 2 | – |
| Medication not effective | 6 (60.0) | – | 4 (80.0) | – | 2 (66.7) | 0 | – |
| Intolerable adverse drug reaction(s) | 3 (30.0) | – | 1 (20.0) | – | 1 (33.3) | 1 (50.0) | – |
| Patient noncompliance | 2 (20.0) | – | 1 (20.0) | – | 1 (33.3) | 0 | – |
| Fear of potential adverse drug reaction(s) | 1 (10.0) | – | 1 (20.0) | – | 0 | 0 | – |
| Othera | 1 (10.0) | – | 0 | – | 0 | 1 (50.0) | – |
| Ruconest® | n = 1 | n = 1 | n = 0 | n = 0 | n = 0 | n = 0 | – |
| Othera | 1 (100) | 1 (100) | – | – | – | – | – |
The prescribed LTP treatment was available for 121 patients accounting for 192 treatment periods. A gap of 30 days between treatment prescriptions or a treatment interruption of > 30 days was considered a new treatment period
The abstractor was asked to provide reasons for discontinuation of treatment, choosing from a list of common factors, free text entry, or “unknown”. ≥ 1 response may have been selected
LTP long-term prophylaxis
a“Other” includes factors such as cancer, patient preference, self-administration of Berinert®, patient having fewer attacks, patient went onto study, and pregnancy