Parental report of levels of care and needs 7-years after severe childhood traumatic brain injury: Results of the traumatisme grave de l’Enfant (TGE) cohort study

Abstract

This study investigated parental reports of the level of care and needs 7-years following severe childhood traumatic brain injury (TBI), and the factors associated with this outcome. From the 65 children (0–15 years) consecutively admitted to the Parisian regional TBI reference intensive care unit following severe TBI, included in this prospective longitudinal study, 39 patients [M(SD) age at injury = 7.5 years (4.6) and assessment 15.3(4.4)] were followed 7-years post-injury and matched with a control group composed of typically developing participants (n = 34) matched by age, sex and parental education level. We used the Care and Need Scale (CANS) and its Pediatric version (PCANS) to assess the primary outcome 7-years post-injury. Concurrent measures included overall level of disability, and parent- and/or self-reported questionnaires assessing executive functioning, behavior, quality of life, fatigue, participation and caregivers’ burden. The level of care and needs was significantly higher in the TBI group than in the control group, the difference being significant with the CANS only. PCANS scores were extremely variable in the control group. High level of dependency was associated with initial TBI severity (higher coma duration and initial Injury Severity Score), higher levels of behavioral problems, executive function deficits, fatigue, and lower participation levels. Caregivers’ burden was strongly associated with the CANS. The CANS provides a simple and reliable measure of the support needed long-term after childhood TBI, in accordance with previous studies. The PCANS scores were not significantly different between the TBI and the control groups, which seems to illustrate the difficulty to assess accurately mild-to-moderate deficits of functional independence/adaptive behavior in children based exclusively on parental reports.