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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