Improvement in health-related quality of life following pediatric critical illness

Introduction: Many children and families report improved health-related quality of life (HRQL) following pediatric ICU care. It is unknown whether improvement represents true change in the patient experience or reflects limitations with survey-based assessment. Methods: We conducted a retrospective cohort study of 736 children ≤18 years admitted to the Seattle Children’s Hospital ICUs from 2011-2017 who were assessed by caregiver proxy-reporting for pre-admission baseline and post-discharge follow-up (median 6 weeks) HRQL using the Pediatric Quality of Life Inventory (n=539) or Functional Status Scale II-R (if severely developmentally disabled; n=197). We identified patients with HRQL improvement by ≥4.5 points (the minimum clinically significant difference) from baseline and determined associations between patient, reporter, and illness characteristics and HRQL improvement using multivariable logistic regression. Results: HRQL improvement occurred in 43% of patients (n=315). Patients with HRQL improvement had lower baseline scores (median 76.2 points [IQR 65.6-85.4]) than patients with decline (median 89.8 [82.0-96.1]) or no change (median 90.6 [82.0-96.0]). Patients with HRQL improvement were younger than those with decline and improvement occurred most frequently among patients admitted for endocrine diagnoses (68%), organ transplant (67%) cardiac surgery (49%), and neurosurgery (47%). Patients with improvement had higher admission PRISM scores but shorter ICU and hospital stays. On multivariable analysis, age < 1 year (adjusted relative risk [aRR] 1.99 vs 1-4 years [95% CI 1.32-2.99]), admission reason (vs respiratory: endocrine aRR 3.42 [1.47-7.94]; organ transplant aRR 2.35 [1.50-8.78]; cardiac surgery aRR 1.58 [1.02-2.70]), caregiver respondent age >55 years (aRR 3.00 vs age 35-44 [1.09-8.20]), and longer time to follow-up (aRR 1.02/day [1.01-1.03]) were associated with HRQL improvement. Improvement most commonly occurred for survey questions related to energy (40%), sleep (39%), and fear (31%). Conclusions: HRQL improvement following pediatric critical illness is most common among patients with lower baseline HRQL who may experience successful treatment of an illness or surgical condition, though survey factors including respondent characteristics and time to follow-up may also contribute.