Prevalence of and risk factors for poor functioning after isolated mild traumatic brain injury in children.

This study aimed to determine the prevalence and predictors of poor 3 and 12 month quality of life outcomes in a cohort of pediatric patients with isolated mild TBI. We conducted a prospective cohort study of children and adolescents <18 years of age treated for an isolated mild TBI, defined as "no radiographically apparent intracranial injury" or "an isolated skull fracture, and no other clinically significant non-brain injuries." The main outcome measure was the change in quality of life from baseline at 3 and 12 months following injury, as measured by the Pediatric Quality of Life index (PedsQL). Poor functioning was defined as a decrease in total PedsQL score of >15 points between baseline and follow-up scores (at 3 and 12 months). Of the 329 patients who met inclusion criteria, 11.3% (95% CI 8.3-15.3%) at 3 months and 12.9% (95% CI 9.6-17.2%) at 12 months following injury had relatively poor functioning. Significant predictors of poor functioning included less parental education, Hispanic ethnicity (at 3 months following injury, but not at 12 months); low household income (at 3 and 12 months), and Medicaid insurance (at 12 months only). Children and adolescents sustaining a mild TBI who are socioeconomically disadvantaged may require additional intervention to mitigate the effects of mild TBI on their functioning.

Family burden after traumatic brain injury in children.

OBJECTIVE: Traumatic brain injury has a substantial impact on caregivers. This study describes the burden experienced by caregivers of children with traumatic brain injury and examines the relationship between child functioning and family burden during the first year after injury. PATIENTS AND METHODS: Children aged 5 to 15 years hospitalized for traumatic brain injury at 4 participating trauma centers were eligible. Caregivers completed baseline and 3- and 12-month telephone interviews measuring the child's health-related quality of life using the Pediatric Quality of Life Inventory. The emotional impact scale of the Child Health Questionnaire was used to identify caregivers with substantial distress, including general worry or interference with family routine. Caregiver perceptions of whether health care needs were met or unmet and days missed from work were also measured. RESULTS: A total of 330 subjects enrolled; follow-up was conducted with 312 at 3 months and 288 at 12 months. Most subjects were white (68%) and male (69%). Abnormal Pediatric Quality of Life Inventory subscores were related to substantial caregiver burden (either general worry or interference in routine). These abnormalities were reported by >75% of patients at 3 months and persisted to 1 year in some patients. Parental perception of unmet health care needs was strongly related to family burden outcomes, with up to 69% of this subset of parents reporting substantial worry, and nearly one quarter reporting interference with daily routine/concentration 1 year after injury. Child dysfunction predicted parental burden at 3 and 12 months. Burden was greater when health care need was unmet. Abnormalities on the Pediatric Quality of Life Inventory predicted the amount of work missed by parents, especially in the presence of unmet needs. CONCLUSIONS: Caregivers are more likely to report family burden problems when child functioning is poorer and health care needs are unmet. Improved identification and provision of services is a potentially modifiable factor that may decrease family burden after pediatric traumatic brain injury.

Health care utilization and needs after pediatric traumatic brain injury.

OBJECTIVE: Children with moderate to severe traumatic brain injury (TBI) show early neurobehavioral deficits that can persist several years after injury. Despite the negative impact that TBI can have on a child's physical, cognitive, and psychosocial well-being, only 1 study to date has documented the receipt of health care services after acute care and the needs of children after TBI. The purpose of this study was to document the health care use and needs of children after a TBI and to identify factors that are associated with unmet or unrecognized health care needs during the first year after injury. METHODS: The health care use and needs of children who sustained a TBI were obtained via telephone interview with a primary caregiver at 2 and 12 months after injury. Of the 330 who enrolled in the study, 302 (92%) completed the 3-month and 288 (87%) completed the 12-month follow-up interviews. The health care needs of each child were categorized as no need, met need, unmet need, or unrecognized need on the basis of the child's use of post-acute services, the caregiver's report of unmet need, and the caregiver's report of the child's functioning as measured by the Pediatric Quality of Life Inventory (PedsQL). Regardless of the use of services or level of function, children of caregivers who reported an unmet need for a health care service were defined as having unmet need. Children who were categorized as having no needs were defined as those who did not receive services; whose caregiver did not report unmet need for a service; and the whose physical, socioemotional, and cognitive functioning was reported to be normal by the caregiver. Children with met needs were those who used services in a particular domain and whose caregivers did not report need for additional services. Finally, children with unrecognized needs were those whose caregiver reported cognitive, physical, or socioemotional dysfunction; who were not receiving services to address the dysfunction; and whose caregiver did not report unmet need for services. Polytomous logistic regression was used to model unmet and unrecognized need at 3 and 12 months after injury as a function of child, family, and injury characteristics. RESULTS: At 3 months after injury, 62% of the study sample reported receiving at least 1 outpatient health care service. Most frequently, children visited a doctor (56%) or a physical therapist (27%); however, 37% of caregivers reported that their child did not see a physician at all during the first year after injury. At 3 and 12 months after injury, 26% and 31% of children, respectively, had unmet/unrecognized health care needs. The most frequent type of unmet or unrecognized need was for cognitive services. The top 3 reasons for unmet need at 3 and 12 months were (1) not recommended by doctor (34% and 31%); (2) not recommended/provided by school (16% and 17%); and (3) cost too much (16% and 16%). Factors that were associated with unmet or unrecognized need changed over time. At 3 months after injury, the caregivers of children with a preexisting psychosocial condition were 3 times more likely to report unmet need compared with children who did not have one. Also, female caregivers were significantly more likely to report unmet need compared with male caregivers. Finally, the caregivers of children with Medicaid were almost 2 times more likely to report unmet need compared with children who were covered by commercial insurance. The only factor that was associated with unrecognized need at 3 months after injury was abnormal family functioning. At 12 months after injury, although TBI severity was not significant, children who sustained a major associated injury were 2 times more likely to report unmet need compared with children who did not. Consistent with the 3-month results, the caregivers of children with Medicaid were significantly more likely to report unmet needs at 1 year after injury. In addition to poor family functioning's being associated with unrecognized need, nonwhite children were significantly more likely to have unrecognized needs at 1 year compared with white children. CONCLUSIONS: A substantial proportion of children with TBI had unmet or unrecognized health care needs during the first year after injury. It is recommended that pediatricians be involved in the post-acute care follow-up of children with TBI to ensure that the injured child's needs are being addressed in a timely and appropriate manner. One of the recommendations that trauma center providers should make on hospital discharge is that the parent/primary caregiver schedule a visit with the child's pediatrician regardless of the post-acute services that the child may be receiving. Because unmet and unrecognized need was highest for cognitive services, it is important to screen for cognitive dysfunction in the primary care setting. Finally, because the health care needs of children with TBI change over time, it is important for pediatricians to monitor their recovery to ensure that children with TBI receive the services that they need to restore their health after injury.

Health-related quality of life during the first year after traumatic brain injury.

OBJECTIVES: To document health-related quality of life (HRQOL) of children with traumatic brain injury (TBI) and to examine the relationship between TBI severity and HRQOL during the first year after injury. DESIGN: Prospective cohort study. SETTING: Four pediatric level I trauma centers. PATIENTS: Children with TBI (n = 330). MAIN EXPOSURE: Traumatic brain injury. MAIN OUTCOME MEASURES: A primary caregiver completed telephone interviews at baseline, 3 months, and 12 months to measure the child's HRQOL using the Pediatric Quality of Life Inventory. The HRQOL outcomes were modeled as a function of injury, patient characteristics, and family characteristics using longitudinal, multivariable regression. RESULTS: A considerable proportion of children had impaired HRQOL at 3 months (42% of children) and 12 months (40% of children) after injury. Multiple dimensions of HRQOL were negatively affected among children with moderate or severe TBI (decrease of 3.7 to 17.6) (P<.05) and did not improve significantly over time. Concomitant lower extremity fractures and spinal injuries resulted in large declines in overall HRQOL, particularly at 3 months after injury (decrease of 12.9 and 8.1, respectively) (P<.05). The HRQOL scores were also reduced by preexisting psychosocial conditions (decrease of 2.9 to 12.3), impaired family functioning (decrease of 5.1 to 6.8), having Medicaid coverage or being uninsured (decrease of 3.1 to 5.5), and single-parent households (decrease of 3.2 to 3.4) (P<.05). CONCLUSIONS: Moderate or severe TBI resulted in measurable declines in children's HRQOL after injury. Injury-related factors impacted HRQOL more compared with patient and family characteristics during the first year after injury.

The Pediatric Quality of Life Inventory: an evaluation of its reliability and validity for children with traumatic brain injury.

OBJECTIVES: To assess the reliability and validity of the Pediatric Quality of Life Inventory, version 4.0 (PedsQL), and to compare it with that of the Behavior Rating Inventory of Executive Function (BRIEF) among children with traumatic brain injury (TBI). DESIGN: Prospective cohort study that documented the health-related quality of life of 391 children at 3 and 12 months postinjury. SETTING: Four level I pediatric trauma centers. PARTICIPANTS: Children (age range, 5-15 y) hospitalized with a TBI or an extremity fracture. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Parent-reported PedsQL and BRIEF scale scores. RESULTS: Both the PedsQL and BRIEF scales showed good internal consistency (PedsQL alpha range, .74-.93; BRIEF alpha range, .82-.98) and test-retest reliability (PedsQL r range, .75-.90; BRIEF r range, .82-.92), respectively. Factor analysis revealed that most PedsQL items loaded most highly on their conceptually derived scale. The PedsQL cognitive function scale detected the largest differences among groups of children with varying severities of TBI as well as parents' assessment of change in cognition postinjury. CONCLUSIONS: Although the reliability of the 2 instruments is comparable, the PedsQL discriminates better among children with TBI. The PedsQL is a promising instrument for measuring the health of children after TBI.