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 | Â | Â | Â | Â | Â |
 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 | Â | Â | Â | Â | Â |
 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 | Â | Â | Â | Â | Â |
 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 |