Andrea Dorsch

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 childs 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 childs use of post-acute services, the caregivers report of unmet need, and the caregivers report of the childs 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 functionings 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 childs 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 childs 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.

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 childs 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.

Disability 3, 12, and 24 Months After Traumatic Brain Injury Among Children and Adolescents

OBJECTIVE: To examine disability in children and adolescents after traumatic brain injury (TBI) across the spectrum of injury severity. METHODS: This was a prospective cohort study of children younger than 18 years treated for a TBI (n = 729) or an arm injury (n = 197) between March 1, 2007, and September 30, 2008. The main outcome measures were disability in health-related quality of life, adaptive skills, and participation in social and community activities 3, 12, and 24 months after injury compared with preinjury functioning. RESULTS: The health-related quality of life for children with moderate or severe TBI was lower at all follow-up times compared with baseline, but there was some improvement during the first 2 years after injury. Three months after injury, there was a substantial decrease in the level of activities in which children with moderate and severe TBI were able to participate; these activities improved at 12 and 24 months but were still significantly impaired. Communication and self-care abilities in children with moderate and severe TBI were lower at 3 months than at baseline and did not improve by 24 months. Children who met the definition of mild TBI but had an intracranial hemorrhage had lower quality-of-life scores at 3 months. CONCLUSIONS: Children with moderate or severe TBI and children with mild TBI who had intracranial hemorrhage had substantial long-term reduction in their quality of life, participation in activities with others, and ability to communicate and care for themselves.

Headache After Pediatric Traumatic Brain Injury: A Cohort Study

Objective: To determine the prevalence of headache 3 and 12 months after pediatric traumatic brain injury (TBI). Methods: This is a prospective cohort study of children ages 5 to 17 years in which we analyzed the prevalence of headache 3 and 12 months after mild TBI (mTBI; n = 402) and moderate/severe TBI (n = 60) compared with controls with arm injury (AI; n = 122). Results: The prevalence of headache 3 months after injury was significantly higher after mTBI than after AI overall (43% vs 26%, relative risk [RR]: 1.7 [95% confidence interval (CI): 1.2–2.3]), in adolescents (13–17 years; 46% vs 25%, RR: 1.8 [95% CI: 1.1–3.1]), and in girls (59% vs 24%, RR: 2.4 [95% CI: 1.4–4.2]). The prevalence of headache at 3 months was also higher after moderate/severe TBI than AI in younger children (5–12 years; 60% vs 27%; RR: 2.0 [95% CI: 1.2–3.4]). Twelve months after injury, TBI was not associated with a significantly increased frequency of headache. However, girls with mTBI reported serious headache (≥ 5 of 10 pain scale rating) more often than controls (27% vs 10%, RR: 2.2 [95% CI: 0.9–5.6]). Conclusions: Pediatric TBI is associated with headache. A substantial number of children suffer from headaches months after their head injury. The prevalence of headache during the year after injury is related to injury severity, time after injury, age, and gender. Girls and adolescents appear to be at highest risk of headache in the months after TBI.

The Longitudinal Course, Risk Factors, and Impact of Sleep Disturbances in Children with Traumatic Brain Injury

This study aimed to examine the prevalence and trajectory of sleep disturbances and their associated risk factors in children up to 24 months following a traumatic brain injury (TBI). In addition, the longitudinal association between sleep disturbances and childrens functional outcomes was assessed. This was a prospective study of a cohort of children with TBI and a comparison cohort of children with orthopedic injury (OI). Parental reports of pre-injury sleep disturbances were compared to reports of post-injury changes at 3, 12, and 24 months. Risk factors for sleep disturbances were examined, including severity of TBI, presence of psychosocial problems, and pain. Sleep disturbances were also examined as a predictor of childrens functional outcomes in the areas of adaptive behavior skills and activity participation. Both cohorts (children with TBI and OI) displayed increased sleep disturbances after injury. However, children with TBI experienced higher severity and more prolonged duration of sleep disturbances compared to children with OI. Risk factors for disturbed sleep included mild TBI, psychosocial problems, and frequent pain. Sleep disturbances emerged as significant predictors of poorer functional outcomes in children with moderate or severe TBI. Children with TBI experienced persistent sleep disturbances over 24 months. Findings suggest a potential negative impact of disturbed sleep on childrens functional outcomes, highlighting the need for further research on sleep in children with TBI.

Persistence of disability 24 to 36 months after pediatric traumatic brain injury: a cohort study

This study examined the outcome of 0- to 17-year-old children 36 months after traumatic brain injury (TBI), and ascertained if there was any improvement in function between 24 and 36 months. Controls were children treated in the emergency department for an arm injury. Functional outcome 36 months after injury was measured by the Pediatric Quality of Life Inventory (PedsQL), the self-care and communication subscales of the Adaptive Behavior Assessment Scale-2nd edition (ABAS-II), and the Child and Adolescent Scale of Participation (CASP). At 36 months after TBI, those with moderate or severe TBI continued to have PedsQL scores that were 16.1 and 17.9 points, respectively, lower than at baseline, compared to the change seen among arm injury controls. Compared to the baseline assessment, children with moderate or severe TBI had significantly poorer functioning on the ABAS-II and poorer participation in activities (CASP). There was no significant improvement in any group on any outcomes between 24 and 36 months. Post-injury interventions that decrease the impact of these deficits on function and quality of life, as well as preventive interventions that reduce the likelihood of TBI, should be developed and tested.

Incidence of disability among children 12 months after traumatic brain injury.

OBJECTIVES We examined the burden of disability resulting from traumatic brain injuries (TBIs) among children younger than 18 years. METHODS We derived our data from a cohort study of children residing in King County, Washington, who were treated in an emergency department for a TBI or for an arm injury during 2007-2008. Disabilities 12 months after injury were assessed according to need for specialized educational and community-based services and scores on standardized measures of adaptive functioning and social-community participation. RESULTS The incidence of children receiving new services at 12 months was about 10-fold higher among those with a mild TBI than among those with a moderate or severe TBI. The population incidence of disability (defined according to scores below the norm means on the outcome measures included) was also consistently much larger (2.8-fold to 28-fold) for mild TBIs than for severe TBIs. CONCLUSIONS The burden of disability caused by TBIs among children is primarily accounted for by mild injuries. Efforts to prevent these injuries as well as to decrease levels of disability following TBIs are warranted.

The health-related quality of life of children with an extremity fracture: a one-year follow-up study.

Purpose: To document the health-related quality of life (HRQOL) of children with an extremity fracture at 3 and 12 months postinjury and to determine whether it varies significantly by fracture region and site. Methods: Children hospitalized for an extremity fracture at 4 pediatric trauma centers were studied. A baseline, 3-month, and 12-month telephone interview were completed by a primary caregiver to measure the childs HRQOL using the Pediatric Quality of Life Inventory (PedsQL). HRQOL was modeled as a function of injury, patient, and family characteristics using a longitudinal regression model. Result: Of the 100 children enrolled, 52 sustained a lower extremity fracture (LEF) and 48 an upper extremity fracture (UEF). Postinjury HRQOL scores were significantly poorer than preinjury scores for all subjects (P = 0.05). In addition, a significant proportion of subjects reported impaired physical and psychosocial HRQOL at 3 (44% and 46%, respectively) and 12 months (23% and 33%, respectively) postinjury. At 3 months postinjury, children with an LEF had significantly poorer HRQOL outcomes compared to children with a UEF. By 12 months postinjury, the physical function of children with a tibia and/or fibula fracture remained significantly lower than children with a UEF (P ≤ 0.05). Conclusions: Children hospitalized for an extremity fracture suffered dramatic declines in physical and psychosocial well-being during the first 3 months postinjury. By 1 year postinjury, most children recovered; however, children with a tibia and/or fibula fracture still reported significantly poorer physical functioning.

Association between posttraumatic stress, depression, and functional impairments in adolescents 24 months after traumatic brain injury

The degree to which postinjury posttraumatic stress disorder (PTSD) and/or depressive symptoms in adolescents are associated with cognitive and functional impairments at 12 and 24 months after traumatic brain injury (TBI) is not yet known. The current study used a prospective cohort design, with baseline assessment and 3-, 12-, and 24-month followup, and recruited a cohort of 228 adolescents ages 14-17 years who sustained either a TBI (n = 189) or an isolated arm injury (n = 39). Linear mixed-effects regression was used to assess differences in depressive and PTSD symptoms between TBI and arm-injured patients and to assess the association between 3-month PTSD and depressive symptoms and cognitive and functional outcomes. Results indicated that patients who sustained a mild TBI without intracranial hemorrhage reported significantly worse PTSD (Hedges g = 0.49, p = .01; Model R(2) = .38) symptoms across time as compared to the arm injured control group. Greater levels of PTSD symptoms were associated with poorer school (η(2) = .07, p = .03; Model R(2) = .36) and physical (η(2) = .11, p = .01; Model R(2) = .23) functioning, whereas greater depressive symptoms were associated with poorer school (η(2) = .06, p = .05; Model R(2) = .39) functioning.

Disparities in Disability After Traumatic Brain Injury Among Hispanic Children and Adolescents

OBJECTIVE: To compare the extent of disability in multiple areas of functioning after mild, moderate, and severe traumatic brain injury (TBI) between Hispanic and non-Hispanic white (NHW) children. METHODS: This was a prospective cohort study of children aged <18 years treated for a TBI between March 1, 2007, and September 30, 2008. Hispanic (n = 74) and NHW (n = 457) children were included in the study. Outcome measures were disability in health-related quality of life, adaptive skills, and participation in activities 3, 12, 24, and 36 months after injury compared with preinjury functioning. We compared change in outcome scores between Hispanic and NHW children at each follow-up time. All analyses were adjusted for age, gender, severity and intent of injury, insurance, family function at baseline, parental education, and income. RESULTS: The health-related quality of life for all children was lower at all follow-up times compared with baseline. Although NHW children showed some improvement during the first 3 years after injury, Hispanic children remained significantly impaired. Significant differences were also observed in the domains of communication and self-care abilities after TBI. Differences between groups in scores for participation in activities were also present but were only significant 3 months after injury. CONCLUSIONS: Hispanic children with TBI report larger and long-term reductions in their quality of life, participation in activities, communication, and self-care abilities compared with NHW children. The reasons for these differences need to be better understood and interventions implemented to improve the outcomes of these children.