HRQoL outcomes assessed at 2 years’ follow-up | No. (%) available data per outcome (N = 1191) | Beta-estimate (95% CI) for the comparison of patients vs. controls, adjusted for risk factorsa | p value | Beta-estimate (95% CI) for the comparison late-PN vs. early-PN, adjusted for risk factorsb | p value |
---|---|---|---|---|---|
Parent-reported HRQoL in children (ITQOL & CHQ-PF50) | |||||
Physical functioning | 960 (81) | − 6.34 (− 8.59 to − 4.10) | < 0.001 | 1.32 (− 1.54 to 4.17) | 0.36 |
Bodily pain | 967 (81) | − 6.81 (− 9.54 to − 4.07) | < 0.001 | 1.20 (− 2.32 to 4.73) | 0.50 |
General behavior | 967 (81) | − 1.87 (− 3.88 to 0.14) | 0.07 | 2.28 (− 0.01 to 4.57) | 0.05 |
General health | 961 (81) | − 27.20 (− 29.91 to − 24.49) | < 0.001 | 2.92 (− 0.47 to 6.31) | 0.09 |
Change in health | 965 (81) | 12.94 (9.93–15.95) | < 0.001 | − 0.88 (− 4.37 to 2.61) | 0.62 |
Parental impact—emotional | 964 (81) | − 7.92 (− 10.50 to − 5.33) | < 0.001 | 2.40 (− 0.80 to 5.60) | 0.14 |
Parental impact—time | 965 (81) | − 5.41 (− 8.07 to − 2.76) | < 0.001 | 3.05 (− 0.37 to 6.47) | 0.08 |
Family activity | 960 (81) | − 6.18 (− 8.78 to − 3.58) | < 0.001 | 3.58 (0.32–6.84) | 0.03 |
Family cohesion | 962 (81) | − 2.25 (− 4.97 to 0.47) | 0.10 | 0.70 (− 2.41 to 3.81) | 0.66 |
Parent-reported HRQoL in children 2.5 to 3 years only (ITQOL) | |||||
Temperament and moods | 548 (83) | − 1.14 (− 3.46 to 1.17) | 0.33 | − 0.33 (− 2.87 to 2.20) | 0.80 |
Growth and development | 547 (83) | − 3.09 (− 6.02 to − 0.15) | 0.04 | 1.56 (− 1.52 to 4.65) | 0.32 |
Getting along | 543 (82) | − 0.25 (− 2.53 to 2.03) | 0.83 | 1.56 (− 0.82 to 3.94) | 0.20 |
Parent-reported HRQoL in children aged 4–18 years only (CHQ-PF50) | |||||
Role functioning emotional/behavior | 425 (80) | − 6.73 (− 12.86 to − 0.60) | 0.03 | − 1.26 (− 7.30 to 4.79) | 0.68 |
Role functioning due to physical problems | 424 (80) | − 7.87 (− 14.35 to − 1.39) | 0.02 | 0.71 (− 5.00 to 6.43) | 0.81 |
Mental health | 425 (80) | − 5.28 (− 8.45 to − 2.11) | 0.001 | 0.01 (− 3.62 to 3.65) | 0.99 |
Self-esteem | 426 (80) | − 2.34 (− 6.20 to 1.51) | 0.23 | 1.08 (− 2.28 to 4.45) | 0.53 |
Parent-reported HRQoL in children (HUI2; single utility scores) | |||||
Sensation | 959 (80) | − 0.03 (− 0.06 to 0.00) | 0.03 | 0.02 (− 0.02 to 0.06) | 0.30 |
Mobility | 959 (80) | − 0.02 (− 0.04 to 0.01) | 0.007 | 0.01 (− 0.02 to 0.023) | 0.62 |
Emotions | 962 (81) | − 0.01 (− 0.02 to 0.00) | 0.06 | 0.00 (− 0.02 to 0.01) | 0.43 |
Cognition | 958 (80) | − 0.01 (− 0.02 to 0.00) | 0.13 | 0.01 (− 0.01 to 0.03) | 0.26 |
Self-care | 960 (81) | − 0.04 (− 0.08 to 0.00) | 0.03 | 0.01 (− 0.04 to 0.05) | 0.83 |
Pain | 961 (81) | 0.00 (− 0.02 to 0.01) | 0.56 | 0.00 (− 0.02 to 0.02) | 0.66 |
Multi-attribute utility function on dead-healthy scale | 944 (79) | − 0.04 (− 0.06 to − 0.02) | < 0.001 | 0.01 (− 0.01 to 0.03) | 0.40 |
Parent-reported HRQoL in children (HUI3; single utility scores) | |||||
Vision | 958 (80) | 0.00 (− 0.01 to 0.01) | 0.96 | 0.00 (− 0.02 to 0.01) | 0.77 |
Hearing | 961 (81) | 0.00 (− 0.02 to 0.02) | 0.80 | 0.01 ( − 0.02 to 0.03) | 0.57 |
Speech | 960 (81) | − 0.04 (− 0.07 to 0.01) | 0.01 | 0.02 (− 0.01 to 0.06) | 0.21 |
Ambulation | 959 (80) | − 0.04 (− 0.06 to − 0.01) | 0.002 | 0.01 (− 0.02 to 0.04) | 0.45 |
Dexterity | 962 (81) | − 0.01 (− 0.04 to 0.01) | 0.24 | 0.01 (− 0.03 to 0.04) | 0.71 |
Emotions | 962 (81) | − 0.007 (− 0.01 to 0.00) | 0.05 | 0.00 (− 0.01 to 0.00) | 0.41 |
Cognition | 944 (79) | − 0.01 (− 0.03 to 0.00) | 0.15 | 0.01 (− 0.02 to 0.04) | 0.52 |
Pain | 961 (81) | − 0.01 (− 0.03 to 0.01) | 0.25 | 0.00 (− 0.02 to 0.03) | 0.71 |
Multi-attribute utility function on dead-healthy scale | 931 (78) | − 0.06 (− 0.09 to − 0.03) | < 0.001 | 0.02 (− 0.02 to 0.05) | 0.33 |
HRQoL of parents (SF-12) | |||||
Physical component score | 938 (79) | − 0.38 (− 1.57 to 0.82) | 0.53 | 0.66 (− 0.75 to 2.08) | 0.36 |
Mental component score | 938 (79) | − 0.88 (− 2.22 to 0.45) | 0.19 | 1.12 (− 0.47 to 2.71) | 0.17 |