Table 5 Health-related quality of life for parents (SF-36®) and their children [Child Health-Related Quality of Life (PedsQL™) and Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD®)] and Family-Centreedness of Care (MPOC©)
| Â | Baselinea | 6 Months | 12 Months | *P value | *P value (T1-T2) | *P value (T2-T3) | *P value (T1-T3) | |||
|---|---|---|---|---|---|---|---|---|---|---|
| Â | Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | Â | Â | Â | Â |
SF-36® a |  |  |  |  |  |  |  |  |  |  |
Physical Functioning | 88.5 (14.8 ) | 95 (20) | 86.7 (23.8) | 100 (20) | 85.1 (22.8) | 95 (20) | 0.79 | Â | Â | Â |
Role – Physical | 75.9 (37.2 ) | 100 (50) | 81.5 (36.1) | 10 (0) | 77.9 (37.4) | 100 (50) | 0.58 |  |  |  |
Bodily Pain | 71.9 (26.5) | 74 (49) | 74.6 (30.0) | 84 (39) | 76.3 (24.3) | 80 (39) | 0.49 | Â | Â | Â |
General Health | 71.3 (21.9) | 75 (33) | 72.0 (22.1) | 77 (25) | 67.2 (25.8) | 75 (25) | 0.52 | Â | Â | Â |
Vitality | 52.9 (25.3) | 55 (40) | 54.8 (22.9) | 60 (30) | 51.7 (22.2) | 50 (30) | 0.88 | Â | Â | Â |
Social Functioning | 74.2 (29.9) | 87.5 (37.5) | 75.3 (29.6) | 87.5 (50.0) | 77.4 (24.7) | 87.5 (37.5) | 0.64 | Â | Â | Â |
Role - Emotional | 77.6 (38.0 ) | 100.0 (33.3) | 80.9 (36.8) | 100.0 (0) | 77.0 (41.9) | 100 (33.3) | 0.91 | Â | Â | Â |
Mental Health | 72.7 (20.8) | 80 (28) | 72.7 (19.9) | 76 (28) | 71.4 (20.7) | 76 (28) | 0.98 | Â | Â | Â |
PedsQL™ b  |  |  |  |  |  |  |  |  |  |  |
Average | 43.6 (14.3) | 43.5 (18.1) | 46.4 (18.7) | 45.7 (30.2) | 47.9 (20.3) | 44.6 (28.8) | 0.08 | Â | Â | Â |
Physical | 32.4 (26.9) | 21.9 (45.3) | 32.9 (29.6) | 25.0 (40.6) | 35.2 (32.9) | 22.9 (46.9) | 0.16 | Â | Â | Â |
Emotional | 63.4 (22.1) | 70.0 (33.8) | 66.1 (21.2) | 65.0 (31.3) | 68.7 (21.8) | 70.0 (30.0) | 0.02 | 0.003 | 0.83 | 0.48 |
Social | 46.0 (19.0) | 45.0 (27.5) | 53.5(19.3) | 50.0 (25.0) | 52.7 (24.8) | 50.0 (20.0) | 0.006 | 0.011 | 0.98 | 0.09 |
School | 38.5 (22.6) | 35.0 (25.0) | 41.8 (22.7) | 40.0 (27.5) | 42.8 (23.8) | 40.0 (30.0) | 0.97 | Â | Â | Â |
CPCHILD® c |  |  |  |  |  |  |  |  |  |  |
Personalized Care/Activities of Daily Living | 43.4 (21.1) | 44.4 (26.5) | 45.7 (18.3) | 44.4 (22.2) | 42.4 (21.7) | 37.0 (28.4) | 0.48 | Â | Â | Â |
Positioning, Transferring and Mobility | 50.4 (26.6) | 42.4 (41.3) | 49.4 (26.4) | 48.6 (37.5) | 48.3 (28.0) | 41.7 (38.5) | 0.48 | Â | Â | Â |
Comfort and Emotions | 81.7 (15.8) | 86.5 (21.0) | 84.8 (15.4) | 87.3 (17.5) | 80.1 (20.6) | 84.9 (21.8) | 0.0006 | 0.21 | 0.002 | 0.03 |
Communication and Social Interaction | 54.1 (21.7) | 54.8 (27.4) | 50.0 (25.4) | 50.0 (39.9) | 54.5 (25.0) | 52.4 (33.3) | 0.12 | Â | Â | Â |
Health Standardized Section | 61.0 (19.7) | 60.0 (26.7) | 63.7 (17.9) | 60.0 (26.7) | 63.1 (20.9) | 66.7 (28.3) | 0.02 | 0.1 | 0.99 | 0.04 |
Child's Overall Quality of Life | 63.1 (21.5) | 60.0 (20.0) | 63.9 (22.2) | 60.0 (40.0) | 59.7 (25.9) | 60.0 (40.0) | 0.10 | Â | Â | Â |
Total Score | 58.2 (15.4) | 57.0 (19.9) | 59.0 (16.1) | 57.6 (21.9) | 58.4 (18.2) | 56.1 (25.5) | 0.0012 | 0.27 | 0.07 | 0.003 |
MPOC© d |  |  |  |  |  |  |  |  |  |  |
Enabling and Partnership | 5.4 (1.4) | 5.5 (1.4) | 5.5 (1.6) | 6.0 (1.3) | 5.9 (1.4) | 6.0 (1.7) | 0.03 | 0.85 | 0.65 | 0.01 |
Providing General Information | 4.2 (1.5) | 4.3 (2.3) | 4.8 (1.8) | 5.2 (2.4) | 4.8 (1.8) | 5.4 (2.0) | 0.03 | 0.1 | 0.09 | 0.08 |
Providing Specific Information about the Child | 5.3 (1.5) | 5.7 (2.0) | 5.4 (1.7) | 6.0 (2.0) | 5.6 (1.6) | 6.0 (1.3) | 0.08 | Â | Â | Â |
Coordinated and Comprehensive care | 5.5 (1.2) | 5.9 (1.5) | 5.9 (1.1) | 6.3 (1.3) | 6.0 (1.2) | 6.3 (1.0) | 0.002 | 0.13 | 0.42 | 0.004 |
Respectful and Supportive Care | 5.6 (1.0) | 5.8 (1.4) | 6.0 (0.9) | 6.0 (1.4) | 6.0 (1.3) | 6.2 (1.0) | 0.001 | 0.02 | 0.07 | 0.01 |