Table 2. Baseline and endline caregiver QoL scores and mean change between the two-time points.
| Baseline Median score IQR) | Endline Median score (IQR) | P-value* | Mean change (95% CI) | |
|---|---|---|---|---|
| Summary scores | ||||
| Total | 12.5 (21.5) | 51.4 (23.6) | P<0.001 | +31.3 (25.6–37.0) |
| Parent | 13.8 (21.3) | 47.5 (25.6) | P<0.001 | +28.9 (22.9–34.9) |
| Family | 14.1 (46.9) | 57.8 (30.0) | P<0.001 | +31.9 (23.5–40.3) |
| Sub-scale scores | ||||
| Physical functioning | 6.7 (27.1) | 50.0 (50.0) | P<0.001 | +26.7 (19.2–34.3) |
| Emotional functioning | 10.0 (22.5) | 47.5 (42.5) | P<0.001 | +33.4 (26.1–40.8) |
| Social functioning | 6.3 (28.1) | 37.5 (56.3) | P<0.001 | +25.9 (17.8–34.1) |
| Cognitive functioning | 10.0 (35.0) | 50.0 (40.0) | P<0.001 | +29.2 (21.8–36.6) |
| Communication functioning | 8.3 (16.7) | 66.6 (37.5) | P<0.001 | +45.4 (37.5–53.4) |
| Worry | 10.0 (20.0) | 50.0 (35.0) | P<0.001 | +31.7 (24.4–39.1) |
| Daily activities | 0 (16.7) | 50 (45.8) | P<0.001 | +32.3 (23.2–41.4) |
| Family relationships | 5.0 (50.0) | 62.5 (31.6) | P<0.001 | +31.6 (21.1–42.2) |
*Wilcoxon Sign Rank test comparing baseline and endline scores; NB: Baseline and endline data were skewed and therefore median scores and a non-parametric statistical test were used. Change scores were normally distributed and therefore mean values were derived. IQR = Interquartile Range