Child health-related quality of life following neurocritical care for traumatic brain injury: an analysis of preference-weighted outcomes.

BACKGROUND: Cost-effectiveness analysis relies on preference-weighted health outcome measures as they form the basis for quality adjusted life years. Studies of preference-weighted outcomes for children following traumatic brain injury are lacking.
OBJECTIVE: This study seeks to describe the preference-weighted health outcomes of children following a traumatic brain injury at 3- and 6-months following pediatric intensive care unit (ICU) discharge. SETTING/PATIENTS: Children aged 5-17 who required ICU admission and endotracheal intubation or mechanical ventilation. MAIN OUTCOME MEASURES: The Quality of Well-being (QWB) score was used to describe preference-weighted outcomes. Clinical measures from the intensive care unit stay were used to estimate risk of mortality. Risk of mortality, Glasgow coma scores, patient length of stay in the intensive care unit, and parent-reported items from the Child Health Questionnaire (CHQ) were used to test construct validity.
METHODS: Subject data were obtained from nine pediatric intensive care units with consent procedures approved by representative institutional review boards. Medical records containing clinical information from the ICU stay were abstracted by the study coordinating center. Caregivers of children were contacted by telephone for follow-up interviews at 3- and 6-months following ICU discharge. All interviews were conducted by telephone with the primary caregiver of the injured child. Preference score statistics are presented overall and in relation to characteristics of the patient and their ICU admission.
RESULTS: A response rate of 59% was achieved for the 3-month interviews (N = 56) and 67% for the 6-month interviews (N = 65) for caregivers of children aged 5 years and above that consented to participate. Overall, QWB scores averaged 0.508 (95% CI: 0.454-0.562) at the 3-month interview and 0.582 (95% CI: 0.526-0.639) at the 6-month interview. For both interview periods, scores ranged from 0.093 to 1.0 on a 0-1 value scale, where 0 represents death and 1 represents perfect health. Specific acute and chronic health problems from the QWB scale were present more often in patients with higher injury severity. Mortality risk, ICU length of stay, Glasgow Coma Scales, and parental reported summary scores from the CHQ all correlated correctly with the QWB scores.
CONCLUSIONS: The findings support the use of the QWB score with parental report to measure preference-weighted health outcomes of children following a traumatic brain injury. Information from the study can be used in economic evaluations of interventions to prevent or treat traumatic brain injuries in children.