Table 1 Basic descriptive statistics

Age (years)

30.00 (7.39)

35.71 (11.21)

< 0.001

 Age at the onset of symptoms

20.68 (6.71)

22.06 (15.60)

0.148

 Time between the onset of symptoms and first time to seek diagnosis

0.12 (4.73)

2.75 (6.28)

< 0.001

 Time between the first time to seek diagnosis and being diagnosed

4.25 (5.03)

3.23 (6.25)

< 0.001

Gender (= male%)

47.06 (32/68)

46.20 (493/1,067)

0.991

Education (%)

 Primary school or lower (6 years of edu)

7.35 (5/68)

12.00 (128/1,067)

0.505

 Middle school (9 years of edu)

22.06 (15/68)

21.84 (233/1,067)

 High school or above (12 years of edu)

70.59 (48/68)

66.17 (706/1,067)

Employment (= yes%)

20.59 (14/68)

52.67 (562/1,067)

< 0.001

Catastrophic health expenditure (CHE) (= yes%)

67.21 (41/61)

70.03 (687/981)

0.748

Rural/Urban (= rural%)

35.29 (24/68)

24.55 (262/1,067)

0.067

Reliance on Assistive Devices (%)

 None

8.82 (6/68)

57.73 (616/1,067)

< 0.001

 Some

50.00 (34/68)

27.09 (289/1,067)

 A lot

41.18 (28/68)

15.18 (162/1,067)

Medicated (= yes% “used ERT in the past 12 months”)

10.29 (7/68)

–

–

Social support (out of 100 points)

 Tangible support

72.87 (15.72)

64.78 (20.43)

< 0.001

 Emotional/informational support

55.70 (16.01)

54.86 (18.21)

0.680

 Positive social interaction

52.65 (15.85)

53.72 (18.89)

0.594

 Affectionate support

55.78 (17.35)

56.48 (20.10)

0.751

 Structural support

5.63 (5.83)

5.62 (10.25)

0.990

Quality of life (out of 100 points)

 Physical health

33.77 (18.28)

48.22 (20.87)

< 0.001

 Psychological health

43.81 (21.7)

43.25 (20.76)

0.837

 Environmental health

39.43 (16.93)

42.70 (17.80)

0.127

 Social relationships

46.20 (19.76)

48.56 (19.54)

0.342