Table 2 Participants’ knowledge about rare diseases
From: Needs assessment study of rare diseases education for nurses and nursing students in Poland
Items | Students N(%) | Nurses N(%) | p - value |
|---|---|---|---|
Have you ever heard the term ‘rare diseases’? |  |  | 0.35 |
 Yes | 107 (94.7) | 141 (91) |  |
 No | 6 (5.3) | 14 (9) |  |
Rare disease is one that affects less than: | Â | Â | 0.004 |
 1 person in 1000 | 17 (15) | 19 (12.2) |  |
1 person in 2000 | 8 (7.1) | 18 (11.6) | Â |
 1 person in 3000 | 1 (0.9) | 6 (3.9) |  |
 1 person in 5000 | 5 (4.4) | 17 (11) |  |
 1 person in 10,000 | 52 (46) | 78 (50.3) |  |
 I do not know | 30 (26.6) | 17 (11) |  |
What is the estimated number of rare diseases? | Â | Â | 0.004 |
 100–500 | 17 (15) | 23 (14.8) |  |
 1000-2000 | 37 (32.7) | 22 (14.2) |  |
 3000-5000 | 14 (12.4) | 18 (11.6) |  |
6000-8000 | 7 (6.2) | 19 (12.3) | Â |
 9000-10,000 | 6 (5.3) | 7 (4.5) |  |
 Over 10,000 | 9 (8) | 29 (18.7) |  |
 I do not know | 23 (20.4) | 37 (23.9) |  |
In what age group do rare diseases most frequently appear? | Â | Â | 0.07 |
 Newborns | 29 (25.7) | 20 (12.9) |  |
Children | 42 (37.2) | 77 (49.7) | Â |
 Adolescents | 3 (2.6) | 4 (2.6) |  |
 Adults | 6 (5.3) | 14 (9) |  |
 They are present in all age groups equally | 21 (18.6) | 29 (18.7) |  |
 I do not know | 12 (10.6) | 11 (7.1) |  |
How many people suffer from rare diseases worldwide? | Â | Â | 0.004 |
 10–15,000,000 | 23 (20.3) | 33 (21.3) |  |
 50–75,000,000 | 35 (31) | 20 (12.9) |  |
 100–150,000,000 | 15 (13.3) | 19 (12.3) |  |
 200–250,000,000 | 5 (4.4) | 9 (5.8) |  |
300–350,000,000 | 7 (6.2) | 27 (17.4) |  |
 Over 500,000,000 | 1 (0.9) | 4 (2.6) |  |
 I do not know | 27 (23.9) | 43 (27.7) |  |
How many people suffer from rare diseases in Poland? | Â | Â | 0.78 |
 500–1000 | 22 (19.5) | 27 (17.4) |  |
 10–15,000 | 28 (24.8) | 34 (22) |  |
 50–75,000 | 17 (15.1) | 15 (9.7) |  |
 100–150,000 | 11 (9.7) | 17 (11) |  |
 300–500,000 | 5 (4.4) | 3 (1.9) |  |
 1000,000 | 2 (1.8) | 5 (3.2) |  |
2–3000,000 | 4 (3.5) | 13 (8.4) |  |
 Over 5000,000 | 0 | 3 (1.9) |  |
 I do not know | 24 (21.2) | 38 (24.5) |  |
What is the most common cause of rare diseases? | Â | Â | 0.62 |
 Infectious and bacterial | 5 (4.4) | 3 (1.9) |  |
Genetic | 67 (59.3) | 104 (67.1) | Â |
 Autoimmune | 26 (23) | 35 (22.6) |  |
 Mitochondrial | 3 (2.7) | 3 (1.9) |  |
 Environmental | 1 (0.9) | 1 (0.7) |  |
 I do not know | 11 (9.7) | 9 (5.8) |  |
What percentage of rare diseases are of genetic origin? | Â | Â | 0.78 |
 5–10% | 19 (16.8) | 32 (20.7) |  |
 20% | 27 (23.9) | 35 (22.6) |  |
 50% | 28 (24.8) | 36 (23.2) |  |
80% | 30 (26.5) | 36 (23.2) | Â |
 100% | 0 | 2 (1.3) |  |
 I do not know | 9 (8) | 14 (9) |  |