Demographic/clinical characteristics | Qualitative interview (n = 15) | Quantitative online survey (n = 217) |
---|---|---|
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 |