Table 1 Survey respondent demographics
From: Patient pathways for rare diseases in Europe: ataxia as an example
A: UK survey | ||
|---|---|---|
Respondent type (n = 273) | Patient | 234 (85.7%) |
On behalf of the patient | 39 (14.3%) | |
Age distribution (n = 270) | 16–29 | 12 (4.4%) |
30–59 | 106 (39.3%) | |
60–80 | 140 (51.9%) | |
80 + | 12 (4.4%) | |
Gender (n = 270) | Female | 142 (52.6%) |
Male | 128 (47.4%) | |
Diagnosis (n = 267) | FRDA | 27 (10.1%) |
Inherited CA | 78 (29.2%) | |
Idiopathic CA | 114 (42.7%) | |
Other types | 38 (14.2%) | |
Not known | 10 (3.8%) | |
Attendance to SAC (n = 248) | Never been | 128 (51.6%) |
Currently going | 72 (29%) | |
Used to go | 48 (19.4%) | |
B: Germany survey | ||
|---|---|---|
Respondent type (n = 101) | Patient | 90 (89.1%) |
On behalf of the patient | 11 (10.9%) | |
Age distribution (n = 101) | 16–29 | 12 (11.9%) |
30–59 | 60 (59.4%) | |
60–80 | 29 (28.7%) | |
80 + | 0 (0%) | |
Gender (n = 101) | Female | 48 (47.5%) |
Male | 53 (52.5%) | |
Diagnosis (n = 94) | FRDA | 14 (14.9%) |
Inherited CA | 52 (55.3%) | |
Idiopathic CA | 5 (5.4%) | |
Other types | 10 (10.6%) | |
Not known | 13 (13.8%) | |
Attendance to SAC (n = 84) | Never been | 23 (23.4%) |
Currently going | 48 (57.1%) | |
Used to go | 13 (15.5%) | |
C: Italy survey | ||
|---|---|---|
Respondent type (n = 173) | Patient | 131 (75.7%) |
On behalf of the patient | 42 (24.3%) | |
Age distribution (n = 173) | 16–29 | 22 (12.72%) |
30–59 | 115 (66.5%) | |
60–80 | 35 (20.2%) | |
80 + | 1 (0.6%) | |
Gender (n = 173) | Female | 93 (53.8%) |
Male | 80 (46.2%) | |
Diagnosis (n = 159) | FRDA | 56 (35.2%) |
Inherited CA | 42 (26.4%) | |
Idiopathic CA | 19 (12%) | |
Other types | 27 (17%) | |
Not known | 15 (9.4%) | |
Attendance to SAC (n = 139) | Never been | 27 (19.4%) |
Currently going | 82 (59%) | |
Used to go | 30 (21.6%) | |