|
Total, n (individual with SMA, caregivers)b
|
15 (8, 7)
|
217 (119, 98)
|
|
Country, n (individual with SMA, caregivers)b
|
|
US
|
15 (8, 7)
|
30 (17, 13)
|
|
Canada
|
0
|
23 (17, 6)
|
|
France
|
0
|
28 (15, 13)
|
|
UK
|
0
|
22 (8, 14)
|
|
Germany
|
0
|
20 (13, 7)
|
|
Italy
|
0
|
31 (16, 15)
|
|
Spain
|
0
|
32 (17, 15)
|
|
Poland
|
0
|
31 (16, 15)
|
|
Age of individual with SMA, mean years (min–max)
|
16 (3–25)
|
27 (2–59)
|
|
Gender, n (%)
|
|
Female
|
11 (73)
|
134 (62)
|
|
Male
|
4 (27)
|
83 (38)
|
|
Type of SMA, n (%)
|
|
Type 2
|
9 (60)
|
116 (53)
|
|
Type 3 – non-ambulant
|
1 (7)
|
51 (24)
|
|
Type 3 – ambulant
|
5 (33)
|
50 (23)
|
|
Currently receiving/taking treatment to manage SMA, n (%)
|
|
Yes
|
13 (87)
|
102 (47)
|
|
No
|
2 (13)
|
115 (53)
|
|
Self-reported confirmed diagnosis of scoliosis, n (%)
|
|
Yes
|
9 (60)
|
159 (73)
|
|
No
|
6 (40)
|
58 (27)
|
|
Self-reported presence of contractures, n (%)
|
|
Yes
|
10 (67)
|
166 (77)
|
|
No
|
5 (33)
|
45 (21)c
|
|
Self-reported daily activities affected, n (%)
|
|
None of the time
|
0
|
N/A
|
|
Hardly any of the time
|
1 (7)
|
N/A
|
|
A little of the time
|
1 (7)
|
N/A
|
|
Some of the time
|
1 (7)
|
N/A
|
|
Most of the time
|
4 (27)
|
N/A
|
|
Almost all of the time
|
5 (33)
|
N/A
|
|
All of the time
|
3 (20)
|
N/A
|
|
0–25% of the time
|
N/A
|
54 (25)
|
|
26–50% of the time
|
N/A
|
52 (24)
|
|
51–75% of the time
|
N/A
|
41 (19)
|
|
76–100% of the time
|
N/A
|
67 (31)
|
|
Hours per week providing care, mean (range)
|
94 (35–168)b
|
79 (0–168)b
|
