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Table 1 Demographic characteristics of the patient sample, by SMA type and by current motor function

From: Areas of improvement in the medical care of SMA: evidence from a nationwide patient registry in Germany

 

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)

  1. *Only adults
  2. **For children: referring to the parents