Table 4 Participants’ knowledge about the healthcare system for RD patients
From: Needs assessment study of rare diseases education for nurses and nursing students in Poland
| Items |
Students N(%) |
Nurses N(%) | p - value |
|---|---|---|---|
| What is the name of the European website providing information about RD and orphan drugs? | 0 | ||
| Rare Disease Foundation | 3 (2.7) | 6 (3.9) | |
| NORD | 4 (3.5) | 1 (0.7) | |
| EURORDIS | 11 (9.7) | 29 (18.7) | |
| R.A.R.E | 5 (4.4) | 5 (3.2) | |
| Orphanet | 1 (0.9) | 28 (18.1) | |
| Global Genes | 1 (0.9) | 3 (1.9) | |
| I do not know | 88 (77.9) | 83 (53.5) | |
| Is there a central register of RD patients in Poland? | 0.31 | ||
| Yes | 64 (56.6) | 100 (64.5) | |
| No | 10 (8.9) | 8 (5.2) | |
| I do not know | 39 (34.5) | 47 (30.3) | |
| What percentage of rare disease can be treated with drugs? | 0.14 | ||
| 0% | 6 (5.3) | 3 (1.9) | |
| 5% | 30 (26.5) | 58 (37.4) | |
| 10% | 22 (19.5) | 23 (14.8) | |
| 15% | 16 (14.2) | 19 (12.3) | |
| 20% | 11 (9.7) | 11 (7.1) | |
| 50% | 1 (0.9) | 7 (4.5) | |
| I do not know | 27 (23.9) | 34 (22) | |
| Are orphan drugs reimbursed in Poland? | 0 | ||
| Yes | 2 (1.8) | 4 (2.6) | |
| Yes, some | 50 (44.3) | 83 (53.6) | |
| No | 15 (13.3) | 46 (29.7) | |
| I do not know | 46 (40.7) | 22 (14.2) | |
| Do RD constitute a serious public health issue? | 0.0001 | ||
| Absolutely yes | 29 (25.7) | 83 (53.5) | |
| Yes | 67 (59.3) | 61 (39.4) | |
| No | 6 (5.3) | 6 (3.9) | |
| Definitely not | 1 (0.9) | 0 | |
| I do not know | 10 (8.8) | 5 (3.2) |