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.

Keywords:

• Severe traumatic brain injury
• child
• long-term outcome
• supervision
• care and needs

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The initial data collection for the initiation of the cohort study was funded by the Département de la Recherche Clinique et du Développement, AP–HP (Paris, No. PHRC 2003; AOM 03018). The 7-year follow-up study was co-funded by the general direction of health and direction of research, studies, assessment and statistics of the French Ministry of Health, by the national fund for health insurance of salaried workers, the national fund for health insurance of independent workers, the national fund for solidarity and autonomy, and the national institute for prevention and education for health, in the call for research projects launched by the IReSP in 2011. In-depth analyses and manuscript preparation were also funded by two grant(s) awarded to Hugo Câmara-Costa: one grant from the French Speaking Society of Research in Children with Disabilities (SFERHE, www.sferhe.org) and one joint grant from the French Traumatic Brain Injury Society (France Traumatisme Crânien – FTC) and the French Speaking Society of Physical Medicine and Rehabilitation (SOFMER, www.sofmer.com).