From: Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China
Variables | Physical functioning | Emotional functioning | Social functioning | School functioning | Psychosocial health | Total |
---|---|---|---|---|---|---|
Types of rare diseases | ||||||
 Patent ductus arteriosus | 65.86 ± 8.88 | 84.38 ± 8.18 | 87.75 ± 8.91 | 88.88 ± 8.95 | 87.00 ± 6.16 | 79.65 ± 5.46 |
 Infantile agranulocytosis | 97.01 ± 3.86 | 94.93 ± 6.18 | 97.76 ± 5.02 | 93.13 ± 9.8 | 95.27 ± 4.55 | 95.88 ± 3.48 |
 Autoimmune thrombocytopenia | 73.33 ± 4.72 | 73.04 ± 6.16 | 75.75 ± 3.47 | 62.25 ± 7.21 | 70.35 ± 3.81 | 71.39 ± 3.27 |
 Polysyndactyly | 90.39 ± 9.76 | 91.59 ± 9.49 | 94.09 ± 7.99 | 91.82 ± 9.27 | 92.50 ± 6.78 | 91.77 ± 6.35 |
 Hirschsprung disease | 74.84 ± 10.44 | 78.56 ± 8.80 | 77.84 ± 10.16 | 74.28 ± 10.38 | 76.89 ± 7.20 | 76.18 ± 6.92 |
 Cleft lip and palate | 99.02 ± 2.38 | 96.47 ± 6.35 | 92.75 ± 11.42 | 95.49 ± 7.09 | 94.9 ± 6.160 | 96.33 ± 4.22 |
 Tetralogy of fallot | 72.38 ± 11.8 | 80.54 ± 10.77 | 84.38 ± 11.64 | 77.41 ± 9.72 | 80.77 ± 8.72 | 77.85 ± 8.90 |
 Myasthenia gravis | 96.58 ± 4.72 | 94.29 ± 5.90 | 98.69 ± 3.83 | 94.05 ± 7.90 | 95.67 ± 3.97 | 95.99 ± 3.31 |
 Guillain–barre syndrome | 74.34 ± 10.39 | 86.21 ± 8.48 | 96.52 ± 5.23 | 92.88 ± 4.68 | 91.87 ± 3.25 | 85.77 ± 4.56 |
 Glycogen storage disease | 76.15 ± 6.69 | 85.50 ± 9.04 | 90.33 ± 6.81 | 84.00 ± 8.14 | 86.61 ± 4.58 | 82.97 ± 4.13 |
 Langerhans cell histiocytosis | 73.10 ± 10.74 | 79.29 ± 11.44 | 90.89 ± 8.50 | 69.82 ± 8.44 | 80.00 ± 5.72 | 77.60 ± 5.15 |
χ2 | 400.95* | 338.69* | 371.83* | 430.23* | 471.05* | 483.00* |
P | < 0.001 | < 0.001 | < 0.001 | < 0.001 | < 0.001 | < 0.001 |
Sex | ||||||
 Male | 79.41 ± 13.45 | 83.67 ± 11.24 | 86.42 ± 11.63 | 80.44 ± 14.72 | 83.51 ± 10.86 | 82.08 ± 10.51 |
 Female | 82.94 ± 13.65 | 84.98 ± 11.85 | 87.59 ± 11.77 | 81.94 ± 15 | 84.84 ± 11.25 | 84.18 ± 11.12 |
t | − 3.29 | − 1.44 | − 1.26 | − 1.28 | − 1.52 | − 2.43 |
P | 0.001 | 0.151 | 0.207 | 0.202 | 0.130 | 0.015 |
Age group | ||||||
 2–4 year | 81.99 ± 14.39 | 85.45 ± 11.5 | 86.87 ± 12.43 | 83.92 ± 13.81 | 85.41 ± 10.78 | 84.22 ± 10.98 |
 5–7 year | 80.24 ± 13.08 | 83.64 ± 11.87 | 87.11 ± 10.86 | 79.93 ± 15.59 | 83.56 ± 11.35 | 82.41 ± 10.85 |
 8–12 year | 79.58 ± 12.63 | 81.65 ± 10.72 | 85.53 ± 11.18 | 74.76 ± 14.41 | 80.65 ± 10.73 | 80.28 ± 10.19 |
 13–18 year | 78.30 ± 11.96 | 85.28 ± 9.31 | 93.33 ± 9.70 | 82.50 ± 13.2 | 87.04 ± 9.07 | 84.00 ± 8.03 |
F (χ2) | 3.78* | 3.16 | 2.32 | 32.11* | 5.53 | 13.36* |
P | 0.287 | 0.024 | 0.074 | < 0.001 | 0.001 | 0.004 |
Household registration place | ||||||
 Hangzhou | 85.24 ± 13.48 | 86.43 ± 11.96 | 89.49 ± 11.04 | 84.14 ± 14.58 | 86.69 ± 11.08 | 86.18 ± 11.13 |
Other cities | 75.88 ± 12.01 | 81.68 ± 10.42 | 83.94 ± 11.74 | 77.52 ± 14.38 | 81.05 ± 10.2 | 79.25 ± 9.14 |
t | 9.37 | 5.42 | 6.21 | 5.81 | 6.72 | 8.73 |
P | < 0.001 | < 0.001 | < 0.001 | < 0.001 | < 0.001 | < 0.001 |
Household types | Â | Â | Â | Â | Â | Â |
Urban areas | 81.96 ± 13.72 | 84.66 ± 11.59 | 87.28 ± 11.82 | 82.23 ± 14.56 | 84.72 ± 10.95 | 83.76 ± 10.89 |
Rural areas | 78.11 ± 13.06 | 83.08 ± 11.27 | 85.96 ± 11.33 | 78.02 ± 15.22 | 82.35 ± 11.12 | 80.88 ± 10.35 |
t | 3.31 | 1.56 | 1.28 | 3.24 | 2.45 | 3.05 |
P | 0.001 | 0.119 | 0.201 | 0.001 | 0.015 | 0.002 |
Family monthly income per capita | ||||||
 < ¥5000 | 79.42 ± 13.79 | 83.44 ± 10.95 | 86.46 ± 11.69 | 81.77 ± 13.55 | 83.89 ± 10.32 | 82.33 ± 10.26 |
 < ¥5000–¥10,000 | 79.72 ± 12.82 | 83.53 ± 11.78 | 85.6 ± 11.69 | 78.71 ± 15.69 | 82.61 ± 11.48 | 81.61 ± 10.74 |
 > ¥10,000 | 88.04 ± 13.08 | 88.17 ± 11.68 | 91.49 ± 10.68 | 85.1 ± 15.18 | 88.25 ± 10.91 | 88.18 ± 11.08 |
F (χ2) | 17.81 | 14.352* | 20.343 | 15.451* | 20.405* | 15.26 |
P | < 0.001 | 0.001 | < 0.001 | < 0.001 | < 0.001 | < 0.001 |