Longitudinal follow-up of families and young children with traumatic brain injury

OBJECTIVES. To examine the stability of functional outcomes 2 years after injury among children who sustained a traumatic brain injury (TBI) before 2 years of age and to examine the characteristics of the families caring for these children. METHODS. All North Carolina-resident children who were hospitalized between January 2000 and December 2001 in any of the state's 9 PICUs and survived a TBI that occurred on or before their second birthday were eligible to participate in the prospective cohort study. Child health status, use of ancillary medical resources, and family characteristics were assessed through maternal caregiver interviews similar to 2 years after injury. Comparisons were made among injury types ( inflicted versus noninflicted). RESULTS. There were 112 children who survived a TBI during the 2-year study period. Fifty-seven (79%) of the 72 maternal caregivers who had completed an interview 1 year after the child's injury participated in the year 2 interview. Most children (67%) had an outcome of mild disability or better at year 2, with 45% functioning at an age-appropriate level. Children's outcomes did not differ significantly at year 2 according to the mechanism of injury. The majority ( 67%) of children retained their Pediatric Overall Performance Category scores from year 1 to year 2. Children who changed were as likely to show improvement as deterioration. Children differed very little across time, as measured with the Stein-Jessup Functional Status II ( Revised) scale. Families tended to have multiple environmental factors that could put their children at risk for poor developmental outcomes, including living below the poverty level (22%) and low social capital (39%). CONCLUSIONS. The children in this cohort had relatively stable functional outcomes from year 1 to year 2 after injury. This population of children remains very vulnerable to poor developmental outcomes secondary to the effects of their TBI and environmental factors.