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Table 1 The demographics characteristics of SMA patients (n = 101)

From: Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study

Variable

N (%)

Child sex

 

 Male

49 (48.50)

 Female

52 (51.50)

Child primary diagnosis

 

 SMA type I

26 (25.70)

SMA type II

56 (55.40)

 SMA type III

19 (18.80)

Average age of SMA type (years)

Age range of SMA type (years)

 SMA type I: 5.28

0.50–16.17

 SMA type II: 6.90

0.92–16.00

 SMA type III: 9.35

2.08–13.67

Disease duration

Age range of disease duration (years)

 SMA type I

4.86 (0.33–15.58)

 SMA type II

6.12 (0.17–15.50)

 SMA type III

5.9 (1.00–13.67)

Mobility

 

 Non-sitter

46 (45.50)

 Sitter

39 (38.60)

 Walker

16 (15.80)

Stable course of disease

 

 No

41 (40.60)

 Yes

60 (59.40)

Skeletal deformity

 

 No

27 (26.70)

 Yes

74 (73.30)

Digestive system dysfunction

 

 No

78 (77.20)

 Yes

23 (22.80)

Medical services

 

 N-MS

67 (66.30)

 MS but not U-MDT

21 (20.80)

 U-MDT

13 (12.90)

Exercise training

 

 No

56 (55.40)

 Yes

45 (44.60)

Respiratory support

 

 No

75 (74.30)

 Yes

26 (25.70)

Nutritional support

 

 No

82 (81.20)

 Yes

19 (18.80)

Scoliosis surgery

 

 No

99 (98.00)

 Yes

2 (2.00)

Nusinersen treatment

 

 No

92 (91.10)

 Yes

9 (8.90)

  1. SMA spinal muscular atrophy, N-MS no medical services, MS but not, U-MDT medical services but not under multidisciplinary team, U-MDT Under multidisciplinary team