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©)
| |
Baselinea |
6 Months |
12 Months |
*P value |
*P value (T1-T2) |
*P value (T2-T3) |
*P value (T1-T3) |
|||
|---|---|---|---|---|---|---|---|---|---|---|
| Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | |||||
|
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 |
|
|
|
|
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 |
|
|
|
|
General Health |
71.3 (21.9) |
75 (33) |
72.0 (22.1) |
77 (25) |
67.2 (25.8) |
75 (25) |
0.52 |
|
|
|
|
Vitality |
52.9 (25.3) |
55 (40) |
54.8 (22.9) |
60 (30) |
51.7 (22.2) |
50 (30) |
0.88 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
Mental Health |
72.7 (20.8) |
80 (28) |
72.7 (19.9) |
76 (28) |
71.4 (20.7) |
76 (28) |
0.98 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
|
|
|
|
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 |
* Analysis using Friedman test; post-hoc testing on results where p<.05 with Sidak adjustments used to adjust the p value for multiple comparisons.
a Data available for n=79 at baseline, n=76 at 6 months, n=77 at 12 months.
b For children ≥ 2 years (data available for n=54 at baseline, n=61 at 6 months, n=58 at 12 months).
c For children ≥ 1 year (data available for n=65 at baseline, n=72 at 6 months, n=72 at 12 months).
d Data available for n=73 at baseline, n=76 at 6 months, n=78 at 12 months.