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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©)

From: Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

  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
  1. * Analysis using Friedman test; post-hoc testing on results where p<.05 with Sidak adjustments used to adjust the p value for multiple comparisons.
  2. a Data available for n=79 at baseline, n=76 at 6 months, n=77 at 12 months.
  3. b For children ≥ 2 years (data available for n=54 at baseline, n=61 at 6 months, n=58 at 12 months).
  4. c For children ≥ 1 year (data available for n=65 at baseline, n=72 at 6 months, n=72 at 12 months).
  5. d Data available for n=73 at baseline, n=76 at 6 months, n=78 at 12 months.