Table 5.
Comparison of caregiver scores by characteristics of the caregiver and the child
| n | Caregiver scores | |||||
|---|---|---|---|---|---|---|
| PTHSI | EQ-5D-5L VAS | EQ-5D-5L LSS | CarerQoL | |||
| Total scores | Median (IQR) | 71.8 (60.0, 85.3) | 90 (75, 100) | 6 (5, 7) | 3 (1, 5) | |
| Characteristics of the caregiver | ||||||
| Caregiver health condition | ||||||
| Yes | 37 | Median (IQR) | 71.6 (52.9, 90.6) | 85 (70, 100) | 6 (5, 7) | 4 (2, 6) |
| No | 106 | Median (IQR) | 71.8 (61.2, 83.6) | 90 (75, 100) | 5 (5, 7) | 3(1, 5) |
| Kruskal–Wallis test (p-value) | 0.001 (p = 0.999) | 1.93 (p = 0.381) | 5.12 (p = 0.077) | 5.99 (p = 0.050) | ||
| Caregiving hours for child per day | ||||||
| 0–3 hours | 15 | Median (IQR) | 74.1 (63.5, 90.6) | 92 (87, 100) | 5 (5, 6) | 2 (1, 4) |
| 4–6 hours | 24 | Median (IQR) | 78.2 (60.0, 85.3) | 88 (65, 99.5) | 5 (5, 6) | 3 (1, 5) |
| 7–10 hours | 25 | Median (IQR) | 74.1 (60.0, 85.9) | 95 (80, 100) | 6 (5, 7) | 2 (1, 5) |
| >10 hours | 79 | Median (IQR) | 68.2 (57.6, 81.2) | 90 (70, 100) | 6 (5, 7) | 4 (1, 6) |
| Kruskal–Wallis test (p-value) | 2.72 (p = 0.605) | 5.78 (p = 0.216) | 3.45 (p = 0.485) | 6.22 (p = 0.183) | ||
| Number of children cared for | ||||||
| 1 | 37 | Median (IQR) | 71.8 (56.5, 81.2) | 94.5 (75.5, 100) | 6 (5, 7) | 3 (2, 5) |
| 2 | 43 | Median (IQR) | 72.9 (58.8, 85.9) | 87 (75, 100) | 5.5 (5, 7) | 3 (1, 6) |
| 3 | 37 | Median (IQR) | 74.1 (64.7, 85.9) | 90 (75, 100) | 5 (5, 7) | 3 (1, 5) |
| 4 | 16 | Median (IQR) | 68.2 (51.2, 87.1) | 86.5 (70, 100) | 5.5 (5, 7) | 4 (1, 6) |
| ≥5 | 29 | Median (IQR) | 71.2 (64.7, 91.8) | 85 (63, 100) | 6 (5, 8.5) | 3 (1, 6) |
| Kruskal–Wallis test (p-value) | 4.144 (p = 0.529) | 2.19 (p = 0.823) | 3.16 (p = 0.675) | 2.19 (p = 0.700) | ||
| Highest level of education completed | ||||||
| High school | 84 | Median (IQR) | 72.4 (61.2, 87.6) | 90 (76, 100) | 5 (5, 7) | 3 (1, 5) |
| No schooling | 3 | Median (IQR) | 90.6 (54.1, 100.0) | 100 (100, 100) | 5 (5, 5) | 0 (0, 1) |
| Primary school | 16 | Median (IQR) | 81.8 (62.4, 88.2) | 85 (70, 100) | 5.5 (5, 7) | 2 (1, 5) |
| Tertiary | 40 | Median (IQR) | 65.9 (52.4, 80.0) | 85 (74, 95) | 6 (5, 9) | 4 (2, 6) |
| Kruskal–Wallis Test (p-value) | 6.59 (p = 0.159) | 7.986 (p = 0.092) | 6.47 (p = 0.167) | 10.99 (p = 0.027) | ||
| Characteristics of the child | ||||||
| Child’s technology for breathing | ||||||
| Non-invasive ventilation | 26 | Median (IQR) | 68.2 (56.5, 74.1) | 88 (66, 100) | 6 (5, 10) | 5 (1, 7) |
| Tracheostomy only | 99 | Median (IQR) | 75.3 (61.2, 88.2) | 90 (75, 100) | 5 (5, 6) | 3 (1, 5) |
| Invasive ventilation (tracheostomy and ventilation) | 19 | Median (IQR) | 61.2 (51.8, 74.1) | 90 (75, 100) | 6 (5, 9) | 5 (1, 6) |
| Kruskal–Wallis test (p-value) | 11.38 (p = 0.003) | 1.38 (p = 0.501) | 6.54 (p = 0.038) | 4.98 (p = 0.173) | ||
| Child’s clinical severity | ||||||
| Mild | 118 | Median (IQR) | 73.5 (62.4, 87.1) | 90 (75, 100) | 5 (5, 7) | 3 (1, 5) |
| Moderate | 25 | Median (IQR) | 58.8 (42.4, 67.1) | 88.5 (70, 100) | 6 (5, 9) | 3 (1, 5) |
| Kruskal–Wallis test (p-value) | 15.25 (p < 0.001) | 1.60 (p = 0.448) | 4.41 (p = 0.110) | 8.39 (p = 0.015) | ||
| Child’s gender | Median (IQR) | |||||
| Female | 58 | Median (IQR) | 70.0 (57.6, 88.2) | 90 (72, 100) | 5 (5, 7) | 3 (1, 6) |
| Male | 86 | 71.8 (61.2, 83.5) | 90 (75, 100) | 6 (5, 7) | 3 (1, 5) | |
| Mann–Whitney U test (p-value) | 2526.00 (p = 0.896) | 2404.5 (p = 0.916) | 2547.00 (p = 0.579) | 2499.50 (p = 0.98) | ||
| Child’s age | ||||||
| 1–12 months | 20 | Median (IQR) | 64.1 (59.4, 77.1) | 80 (74, 100) | 6 (5, 7) | 3 (0, 5) |
| 13–24 months | 12 | Median (IQR) | 60.0 (39.4, 85.9) | 93 (73, 100) | 6.5 (5, 9.5) | 4 (2, 7) |
| 2–4 years | 34 | Median (IQR) | 72.9 (63.5, 90.6) | 93 (79, 100) | 6 (5, 7) | 3 (1, 5) |
| 5–7 years | 28 | Median (IQR) | 82.4 (70.6, 90.0) | 95 (81, 100) | 5 (5, 5) | 2 (1, 4) |
| 8–12 years | 27 | Median (IQR) | 74.1 (57.7, 83.5) | 90 (70, 100) | 6 (5, 7) | 2 (1, 4) |
| 13–18 years | 23 | Median (IQR) | 62.4 (47.1, 71.8) | 86 (61, 100) | 6 (5, 9) | 5 (2, 6) |
| Kruskal–Wallis test (p-value) | 18.82 (p = 0.002) | 3.76 (p = 0.584) | 12.06 (p = 0.034) | 10.23 (p = 0.069) | ||
HRQoL health-related quality of life, IQR interquartile range, LSS level sum score, PedsQL Pediatric Quality of Life Inventory, PTHSI Paediatric Tracheostomy Health Status Instrument, VAS Visual Analogue Scale
EQ-5D-5L LSS score ranges from 5 to 25 with a lower score indicating a better HRQoL. The PTHSI and EQ VAS scores range from 0 to 100 with a higher score indicating a better HRQoL. The CarerQoL summary score ranges from 0 to 14 with a higher score indicating a greater burden of care. p-Value (two-sided test), bold indicates significance at p < 0.05