Table 4.

Multivariate models for the subgroup of children with end-of-life surveys: mean change in HRQOL score associated with moderate to severe distress from given symptom. N=73 surveys.

PedsQL Score	Distressing Symptom*	Mean change in QOL score (95% CI)**	p-value
TOTAL score	Sadness	−15.02 (−26.07, −3.97)	0.008
	Dry mouth	−12.05 (−21.03, −3.07)	0.009
	Anorexia	−11.22 (−21.65, −0.8)	0.035
	Irritability	−9.62 (−18.82, −0.42)	0.040
	Drowsiness	−9.37 (−17.42, −1.32)	0.023
	Pain	−6.63 (−13.01, −0.25)	0.042
PHYSICAL score	Dry mouth	−18.93 (−33.5, −4.36)	0.0109
	Anorexia	−18.04 (−32.74, −3.33)	0.0162
	Drowsiness	−15.33 (−23.5, −7.17)	0.0002
	Pain	−14.85 (−24.92, −4.78)	0.0039
	Diarrhea	−10.61 (−21.09, −0.13)	0.0471
	Vomiting	−9.67 (−18.22, −1.12)	0.0267
	Irritability	−7.78 (−13.64, −1.93)	0.0091
	Nausea	−7.2 (−12.64, −1.77)	0.0094
EMOTIONAL score	Sadness	−28.03 (−42.89, −13.17)	0.0002
	Worrying	−23.9 (−39.4, −8.4)	0.0025
	Irritability	−14.35 (−28.38, −0.32)	0.0449
	Drowsiness	−13.54 (−24.06, −3.03)	0.0116
SOCIAL score	Irritability	−15.17 (−29.01, −1.34)	0.0316
	Anorexia	−13.72 (−21.93, −5.51)	0.0011
	Dry mouth	−13.71 (−20.9, −6.53)	0.0002
	Fatigue	−11.76 (−22.27, −1.26)	0.0282
	Vomiting	−4.97 (−8.5, −1.45)	0.0057
SCHOOL score	Dry mouth	−13.49 (−26.23, −0.74)	0.0380

^*Eleven symptoms had distressful events in at least 15 surveys. Distressing symptoms listed if significantly associated with change in QOL score in a linear mixed model including the single distress-symptom, treatment intensity and time since last progression as fixed effects and child as random effect (p<0.05).

^**Minimal Clinically Important Differences (MCID) for PedsQL: Total score MCID 4.4; Physical sub-score MCID 6.7, Emotional sub-score MCID 8.9, Social sub-score MCID 8.4; Legend: QOL: Quality of Life; PedsQL: Pediatric Quality of Life Inventory 4.0; CI: confidence interval