Table 4.
Summary scores by sociodemographic and clinical characteristics
| n | EQ-TIPS LSS | n | Y-3L LSS | n | EQ-TIPS/Y-3L %LSS | EQ VAS | PedsQL total score | PTHSI % | ||
|---|---|---|---|---|---|---|---|---|---|---|
| Total | Median (IQR) | 66 | 7 (6, 9) | 77 | 7 (5, 10) | 143 | 40 (33.3, 63.9) | 90 (70, 100) | (76.6 (57.7, 87.1) | 80.0 (66.7, 86.7) |
| Age groups | ||||||||||
| 1–12 months | Median (IQR) | 20 | 6 (6, 8) | 20 | 33.3 (33.3, 41.7) | 87.5 (73, 100) | 83 (74.5, 92.8) | 93.3 (86.7, 93.3) | ||
| 13–24 months | Median (IQR) | 12 | 8 (6, 12) | 12 | 44.4 (33.3, 66.7) | 87.0 (55.0, 100.0) | 74.3 (53.9, 82.8) | 93.3 (76.7, 96.7) | ||
| 2–4 years | Median(IQR) | 34 | 7 (6, 11) | 34 | 38.9 (33.3, 61.1) | 90.0 (80.0, 100.0) | 77.2 (59.2, 90.9) | 80.0 (66.7, 86.7) | ||
| 5–7 years | Median (IQR) | 28 | 6 (5, 8) | 28 | 40.0 (33.3, 53.3) | 95 (80, 100) | 76.6 (57.3, 86.1) | 80 (70, 87) | ||
| 8–12 years | Median (IQR) | 26 | 8 (6, 11) | 26 | 53.3 (40.0, 73.3) | 84 (60, 100) | 52.9 (33.8, 57.7) | 80 (40, 87) | ||
| 13–18 years | Median (IQR) | 23 | 10 (6, 11) | 23 | 66.7 (40.0, 73.3) | 80 (70, 97) | 47.9 (38.5, 64.8) | 60 (47, 80) | ||
| Kruskal–Wallis H test (p-value) | 3.35 (p = 0.187) | 12.1 (p = 0.002) | 20.13 (p = 0.001) | 3.37 (p = 0.643) | 16.2 (p = 0.006) | 33.93 (p < 0.001) | ||||
| Gender | ||||||||||
| Female | Median (IQR) | 25 | 7 (6, 8) | 32 | 7 (5, 11) | 57 | 38.9 (33.3, 53.3) | 90 (70, 100) | 77.9 (62.6, 87.1) | 80 (66.7, 86.7) |
| Male | Median (IQR) | 41 | 7 (6, 11) | 45 | 8 (6, 10) | 86 | 46.7 (933.3, 66.7) | 90 (73, 100) | 70.7 (55.0, 91.1) | 80 (66.7, 86.7) |
| Mann–Whitney U test (p-value) | 545.0 (p = 0.651) | 1.08 (p = 0.300) | 2851.5 (p = 0.136) | 2701.0 (p = 0.389) | 1086 (p = 0.262) | 2488.5 (p = 0.982) | ||||
| Technology for breathing | ||||||||||
| Non-invasive ventilation | Median (IQR) | 5 | 8 (7, 9) | 21 | 9 (8, 11) | 26 | 56.7 (46.7, 73.3) | 80 (70, 95) | 66.5 (48.8, 77.9) | 80 (60, 86.7) |
| Tracheostomy | Median (IQR) | 51 | 7 (6, 11) | 47 | 6 (5, 9) | 98 | 38.9 (33.3, 60.0) | 90 (70, 100) | 76.8 (59.6, 91.1) | 80 (66.7, 86.7) |
| Tracheostomy and ventilation | Median (IQR) | 9 | 7 (6, 9) | 9 | 10 (6, 11) | 19 | 46.7 (33.3, 73.3) | 90 (80, 100) | 78.1 (57.7, 83.1) | 66.7 (46.7, 86.7) |
| Kruskal–Wallis H test (p-value) | 0.841 (p = 0.840) | 8.92 (p = 0.012) | 9.65 (p = 0.008) | 2.51 (p = 0.286) | 1.78 (p = 0.411) | 2.84 (p = 0.242) | ||||
| Clinical severity | ||||||||||
| Mild | Median (IQR) | 56 | 7 (6, 9) | 62 | 6 (5, 9) | 117 | 40.0 (33.3, 53.3) | 90 (70, 100) | 76.6 (59.6, 87.1) | 80 (66.7, 86.7) |
| Moderate | Median (IQR) | 9 | 9 (6, 14) | 15 | 11 (10, 12) | 25 | 66.7 (50.0, 80.0) | 85 (70, 100) | 65.4 (46.8, 83.9) | 80 (46.7, 93.3) |
| Kruskal–Wallis H test (p-value | 1.86 (p = 0.394) | 19.42 (p < 0.001) | 15.18 (p < 0.001) | 2.30 (p = 0.317) | 2.48 (p = 0.290) | 1.51 (p = 0.470) | ||||
| Clinical prognosis | ||||||||||
| Good, technology likely permanent | Median (IQR) | 12 | 9 (7, 14) | 29 | 9 (6, 11) | 42 | 60.0 (38.9, 73.3) | 83 (70, 100) | 58.8 (50.0, 77.7) | 80 (60, 86.7) |
| Long survival, weaning possible | Median (IQR) | 35 | 6 (6, 7) | 27 | 6 (5, 9) | 62 | 33.3 (33.3, 50.0) | 93 (70, 100) | 78.1 (67.4, 89.9) | 80 (66.7, 86.7) |
| Poor, survival unlikely beyond a year | Median (IQR) | 2 | 8 (6, 9) | 1 | 9 (9, 9) | 3 | 50.0 (33.3, 60.0) | 90 (45, 100) | 78..9 (77.2, 80.5) | 93.3 (80.0, 100.0) |
| Kruskal–Wallis H test (p-value | 14.09 (p = 0.003) | 4.07 (p = 0.254) | 14.67 (p = 0.002) | 1.86 (p = 0.603) | 5.33 (p = 0.149) | 3.39 (p = 0.335) | ||||
LSS level sum score, PedsQL Pediatric Quality of Life Inventory, PTHSI Paediatric Tracheostomy Health Status Instrument, VAS Visual Analogue Scale