| Total sample, by SMA subtype (n = 107) | Total sample, by current motor function (n = 107) | Total | |||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
SMA1 | SMA2 | SMA3a | SMA3b | SMA4 | Non-sitter | Sitter | Walker | |||||||||
Child | Adult | Child | Adult | Child | Adult | Child | Adult | Adult | Child | Adult | Child | Adult | Child | Adult | ||
(n = 5) | (n = 3) | (n = 11) | (n = 29) | (n = 5) | (n = 14) | (n = 3) | (n = 36) | (n = 1) | (n = 4) | (n = 7) | (n = 13) | (n = 56) | (n = 7) | (n = 20) | (n = 107) | |
Mean age, in years (SD) | 7.4 (4.3) | 31.3 (18.1) | 10.6 (4.9) | 32.1 (9.2) | 9.6 (4.9) | 51.2 (12.5) | 11.3 (3.2) | 47.7 (15.1) | 48 (-) | 13 (3.5) | 39 (15.5) | 9.4 (5.0) | 41.3 (16.0) | 8.9 (3.8) | 46.2 (12.0) | 35 (19.1) |
Female sex, n (%) | 5 (100) | 2 (67) | 5 (45) | 19 (66) | 3 (60) | 8 (57) | – | 14 (39) | – | 2 (50) | 4 (57) | 9 (69) | 31 (55) | 2 (29) | 8 (40) | 56 (52) |
Living situation* | ||||||||||||||||
Alone, n (%) | – | – | – | 8 (28) | – | 3 (21) | – | 4 (11) | – | – | 1 (14) | – | 13 (23) | – | 1 (5) | 15 (14) |
With own family, n (%) | – | – | – | 8 (28) | – | 10 (71) | – | 24 (67) | 1 (100) | – | 3 (43) | – | 22 (39) | – | 18 (90) | 43 (40) |
With parents, n (%) | – | 2 (67) | – | 10 (35) | – | 1 (7) | – | 5 (14) | – | – | 3 (43) | – | 15 (27) | – | – | 18 (17) |
Other, n (%) | – | 1 (33) | – | 3 (10) | – | – | – | 3 (8) | – | – | – | – | 6 (11) | – | 1 (5) | 7 (7) |
Married or in a relationship, n (%)** | 4 (80) | – | 11 (100) | 14 (48) | 5 (100) | 11 (79) | 3 (100) | 28 (78) | 1 (100) | 4 (100) | 4 (57) | 12 (92) | 30 (54) | 7 (100) | 20 (100) | 77 (72) |
Education (highest completed) | ||||||||||||||||
Pre–school/ no school, n (%) | 3 (60) | – | 3 (27) | – | 2 (40) | – | – | – | – | – | – | 5 (39) | – | 3 (43) | – | 8 (8) |
Primary school, n (%) | 1 (20) | 1 (33) | 2 (18) | 1 (3) | 1 (20) | 2 (14) | 2 (67) | 4 (11) | – | 1 (25) | 2 (29) | 3 (23) | 6 (11) | 2 (29) | – | 14 (13) |
Secondary school, n (%) | 1 (20) | 1 (33) | 3 (27) | 4 (14) | 1 (20) | 5 (36) | 1 (33) | 11 (31) | 1 (100) | 2 (50) | – | 3 (23) | 13 (23) | 1 (14) | 9 (45) | 28 (26) |
High school/ general certificate, n (%) | – | 1 (33) | 3 (27) | 24 (83) | 1 (20) | 7 (50) | – | 21 (58) | – | 1 (25) | 5 (71) | 2 (15) | 37 (66) | 1 (14) | 11 (55) | 57 (53) |
Highest vocational training* | ||||||||||||||||
None, n (%) | – | 1 (33) | – | 8 (28) | – | – | – | 2 (6) | – | – | 2 (29) | – | 8 (14) | – | 1 (5) | 11 (10) |
Apprenticeship, n (%) | – | 1 (33) | – | 9 (31) | – | 7 (50) | – | 24 (66) | 1 (100) | – | 3 (43) | – | 27 (48) | – | 12 (60) | 42 (39) |
University studies, n (%) | – | 1 (33) | – | 12 (41) | – | 7 (50) | – | 10 (28) | – | – | 2 (29) | – | 21 (38) | – | 7 (35) | 30 (28) |
Currently employed, n (%)** | 5 (100) | 2 (67) | 11 (100) | 18 (62) | 5 (100) | 9 (64) | 3 (100) | 20 (55) | – | 4 (100) | 4 (57) | 13 (100) | 31 (55) | 7 (100) | 14 (70) | 73 (68) |