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Table 3 Psychosocial burden of Gaucher disease on the caregivers

From: Economic burden and health related quality of life of ultra-rare Gaucher disease in China

 

Patients (n = 30)

Caregivers (n = 49)

Norm of healthy Chinese people

Pa

pb

SSRSc

Maximum score, 40 points

     

 Objective support

8.2 ± 2.5

8.2 ± 2.3

9.1 ± 2.9

0.059

0.009

 Subjective support

17.6 ± 5.0

19.9 ± 4.9

23.5 ± 4.3

< 0.001

< 0.001

 Utilization of support

6.6 ± 1.8

6.7 ± 1.9

7.8 ± 2.0

0.001

< 0.001

 Mean ± SD

32.4 ± 7.4

34.9 ± 7.6

40.5 ± 6.8

< 0.001

< 0.001

PSQI d

Maximum score, 21 points

     

 Not good

6 (20.0)

16 (32.7)

   

 Good

24 (80.0)

33 (67.3)

   

 Mean ± SD

7.9 ± 2.9

8.7 ± 3.6

3.9 ± 2.5

< 0.001

< 0.001

 Subjective sleep quality

1.57 ± 0.97

1.71 ± 0.89

0.63 ± 0.68

< 0.001

< 0.001

 Sleep latency

1.77 ± 0.77

1.59 ± 0.91

0.70 ± 0.86

< 0.001

< 0.001

 Sleep duration

0.87 ± 1.01

1.24 ± 0.97

0.70 ± 0.58

< 0.001

< 0.001

 Habitual sleep efficiency

0.27 ± 0.69

0.63 ± 0.86

0.15 ± 0.47

< 0.001

< 0.001

 Step disturbance

1.73 ± 0.52

1.61 ± 0.57

0.90 ± 0.44

< 0.001

< 0.001

 Use of sleeping medication

0.00

0.08 ± 0.34

0.06 ± 0.24

–

< 0.001

 Daytime dysfunction

1.67 ± 1.03

1.82 ± 1.11

0.73 ± 0.83

< 0.001

< 0.001

SF-36e, f

Maximum score, 100 points for each item

     

 Total score

41.3 ± 18.6

46.5 ± 19.3

   

 Physical Component Summary (PCS)

39.4 ± 22.4

47.6 ± 23.0

77.5 ± 16.0

< 0.001

< 0.001

 Mental Component Summary (MCS)

43.2 ± 16.1

45.4 ± 20.4

71.3 ± 17.9

< 0.001

< 0.001

 Physical functioning (PF)

63.2 ± 20.2

63.8 ± 30.2

87.9 ± 17.0

< 0.001

< 0.001

 Role physical (RP)

13.6 ± 32.3

27.6 ± 43.1

77.5 ± 34.9

< 0.001

< 0.001

 Bodily pain (BP)

51.8 ± 23.3

60.3 ± 26.3

82.2 ± 17.0

< 0.001

< 0.001

 General health (GH)

29.0 ± 25.9

38.9 ± 21.9

62.5 ± 17.9

< 0.001

< 0.001

 Vitality (VT)

42.7 ± 16.5

45.3 ± 18.6

68.2 ± 17.6

< 0.001

< 0.001

 Social functioning (SF)

71.6 ± 26.9

67.6 ± 30.0

80.7 ± 20.0

0.013

0.004

 Role emotional (RE)

6.1 ± 20.1

20.4 ± 37.2

67.9 ± 39.4

< 0.001

< 0.001

 Mental health (MH)

52.4 ± 17.1

48.3 ± 16.0

68.5 ± 16.9

< 0.001

< 0.001

  1. SSRS = Social Support Rating Scale; PSQI = Pittsburgh Sleep Quality Index; SF-36 = Medical Outcomes Study 36-item Short Form; SD = standard deviation
  2. aPatients vs. normal values for healthy Chinese
  3. bCaregivers vs. normal values for healthy Chinese
  4. cN = 3342 [72]
  5. dN = 112 [73]
  6. eN = 17,754 [74]
  7. fN of patients ≥ 15 is 11