James R. Christensen

Predictors of outcome in severely head-injured children

ObjectiveDetermine variables in the acute care period associated with survival and pediatric intensive care unit (PICU) length of stay (LOS) for children with severe traumatic brain injury. DesignRetrospective cohort. SettingLevel 1 pediatric trauma center. PatientsChildren (0–17 yrs) admitted 1991 to 1995 with nonpenetrating traumatic brain injury and admission Glasgow Coma Scale score of ≤8. InterventionsNone. Measurements and Main Results The first 72 hrs of hospitalization were analyzed in detail for 136 patients. The primary end point was survival; secondary end points were PICU LOS, cost, and day at which Glasgow Coma Scale score was ≥14. Predictors of outcome were abstracted, including Pediatric Trauma Score, Glasgow Coma Scale score, Pediatric Risk of Mortality, physiologic variables, computed tomography evidence of brain injury, and neuroresuscitative medications. The fatality rate was 24%. Age and gender were similar between groups (p ≥ .1). Survival was independently predicted by 6-hr Glasgow Coma Scale score (odds ratio [OR] 4.6; 95% confidence interval [CI] 2.06–11.9;p < .001) and maximum systolic blood pressure (OR 1.05; 95% CI 1.01–1.09;p < .02). Odds of survival increased 19-fold when maximum systolic blood pressure was ≥135 mm Hg (OR 18.8; 95% CI 2.0–178.0;p < .01). By discharge, 67% of patients had an age-appropriate Glasgow Coma Scale score. Median hospital costs were

Health care utilization and needs after pediatric traumatic brain injury.

8,798 for survivors: only mannitol use independently predicted high cost (odds ratio 4.9; 95% CI 1.2–19.1;p < .01). For survivors, median PICU LOS was 2 days, although 25% had LOS >6 days. Six-hour Glasgow Coma Scale score (OR 0.62; 95% CI 0.48–0.80;p < .001) and mannitol (OR 7.9; 95% CI 2.3–27.3;p < .001) were each independently associated with a prolonged LOS among survivors. ConclusionsPatients with higher 6-hr Glasgow Coma Scale scores were more likely to survive. Adjusting for severity of injury, survival was associated with maximum systolic blood pressure ≥135 mm Hg, suggesting that supranormal blood pressures are associated with improved outcome. Mannitol administration was associated with prolonged LOS, yet conferred no survival advantage. We suggest reevaluation of blood pressure targets and mannitol use in children with severe traumatic brain injury.

Family Burden After Traumatic Brain Injury in Children

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.

Consequences of the delayed diagnosis of ataxia-telangiectasia

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.

Clinical Predictors of Posttraumatic Stress Disorder After Closed Head Injury in Children

Objectives. Ataxia-telangiectasia (AT) is a rare, autosomal recessive neurodegenerative disorder in which the diagnosis is obvious when ataxia and telangiectasia are both present. However, the diagnosis can be made upon the onset of ataxia and before the appearance of telangiectasia if confirmed by laboratory tests. Early diagnosis is important for genetic counseling, appropriate care, and avoidance of unnecessary tests. The purpose of this study is to identify factors responsible for delays in the diagnosis of AT. Design. The records of all patients seen at the Ataxia-Telangiectasia Clinical Center from July 1, 1995 to April 1, 1997 were reviewed to determine age of onset of gait abnormality, recognition of telangiectasia, and diagnosis. Results. In 48 patients with AT, who were the index cases in their respective families, the median age of diagnosis (78 months) occurred after the onset of gait abnormalities (15 months) and closely corresponded to the development of telangiectasia (72 months). In the majority of cases (34/48), telangiectasia appeared before the diagnosis was established. The most common misdiagnosis was cerebral palsy (29/48 cases). Twenty-one children (4 with AT) were born after the start of symptoms in the index case, but before the establishment of a diagnosis. Conclusions. The term AT, although a concise and memorable label for the disorder, is also a barrier to early diagnosis. We recommend the use of routine serum α-fetoprotein testing for all children with persistent ataxia.

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

OBJECTIVE To describe injury, demographic, and neuropsychiatric characteristics of children who develop posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) after closed head injury (CHI). METHOD Ninety-five children with severe CHI and amnesia for the event were prospectively followed for 1 year. Structured interviews were administered twice to the parents: shortly after injury to cover the childs premorbid status, and 1 year after injury. The child was also interviewed twice: shortly after injury to cover current status, and 1 year after injury. Outcome measures were diagnostic status (PTSD by parent or child) and symptom severity (PTSS by parent or child). RESULTS Twelve children developed PTSD by 1 year after injury, 5 according to parent report, 5 according to child report, and 2 according to both parent and child report. Predictors of PTSD at 1 year post-CHI included female gender and early post-CHI anxiety symptoms. Predictors of PTSS at 1 year post-CHI were (1) premorbid psychosocial adversity, premorbid anxiety symptoms, and injury severity; and (2) early post-CHI depression symptoms and nonanxiety psychiatric diagnoses. CONCLUSIONS PTSD developed in 13% of children with severe CHI accompanied by traumatic amnesia. Predictors of PTSD and PTSS after CHI, according to parent and child report, are consistent with predictors of PTSD and PTSS that develop after non-head injury trauma.

Rationale, timeline, study design, and protocol overview of the therapeutic hypothermia after pediatric cardiac arrest trials

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.

Differences in attention, executive functioning, and memory in children with and without ADHD after severe traumatic brain injury.

Objective: To describe the rationale, timeline, study design, and protocol overview of the Therapeutic Hypothermia after Pediatric Cardiac Arrest trials. Design: Multicenter randomized controlled trials. Setting: Pediatric intensive care and cardiac ICUs in the United States and Canada. Patients: Children from 48 hours to 18 years old, who have return of circulation after cardiac arrest, who meet trial eligibility criteria, and whose guardians provide written consent. Interventions: Therapeutic hypothermia or therapeutic normothermia. Measurements and Main Results: From concept inception in 2002 until trial initiation in 2009, 7 years were required to plan and operationalize the Therapeutic Hypothermia after Pediatric Cardiac Arrest trials. Two National Institute of Child Health and Human Development clinical trial planning grants (R21 and R34) supported feasibility assessment and protocol development. Two clinical research networks, Pediatric Emergency Care Applied Research Network and Collaborative Pediatric Critical Care Research Network, provided infrastructure resources. Two National Heart Lung Blood Institute U01 awards provided funding to conduct separate trials of in-hospital and out-of-hospital cardiac arrest. A pilot vanguard phase that included half the clinical sites began on March 9, 2009, and this was followed by full trial funding through 2015. Conclusions: Over a decade will have been required to plan, design, operationalize, and conduct the Therapeutic Hypothermia after Pediatric Cardiac Arrest trials. Details described in this report, such as participation of clinical research networks and clinical trial planning grants utilization, may be of utility for individuals who are planning investigator-initiated, federally supported clinical trials.

Modelling early recovery patterns after paediatric traumatic brain injury

Although the development of Attention Deficit Hyperactivity Disorder (ADHD) after traumatic brain injury (TBI) has been described, it is unknown whether children with TBI and ADHD have greater neuropsychological impairments than children with TBI alone. This study examines attention, executive functioning, and memory in children with TBI-only and TBI + ADHD. Caregivers of 82 children with severe TBI completed structured psychiatric interviews at enrollment to diagnose premorbid ADHD and one-year after injury to diagnose post-injury ADHD. Children underwent neuropsychological testing one year after injury. One memory measure significantly differentiated children with TBI-only from children with newly developed ADHD [secondary ADHD (S-ADHD)] and those with premorbid ADHD that persisted after injury [persisting ADHD (P-ADHD)]. Compared with the TBI-only group, children with TBI + ADHD had worse performance on measures of attention, executive functioning, and memory. Results reveal that in children with severe TBI, the behavioral diagnosis of ADHD is associated with more difficulty in attention, executive functioning, and memory. Additionally, results suggest greater deficits in memory skills in the S-ADHD group compared with the P-ADHD group. Although findings provide preliminary support for distinguishing P-ADHD from S-ADHD, further research is needed to investigate neuropsychological differences between these subgroups of children with severe TBI.

Examining acute rehabilitation outcomes for children with total functional dependence after traumatic brain injury: a pilot study.

Objective To describe the range of early recovery patterns seen in children admitted for inpatient rehabilitation after traumatic brain injury and to build simple predictive models of expected recovery. Patients 103 consecutive paediatric admissions to a neurological rehabilitation facility after closed head injury. Methods Childrens recoveries were defined by repeated scores on the WeeFIM (a validated paediatric measure of functional independence) assembled into recovery trajectories. Non-linear mixed effects modelling was used to define ‘typical’ recoveries and to identify useful simple predictor variables. Results WeeFIM recovery curves showed a characteristic sigmoidal form with an initial slow phase followed by a mid-phase of fastest improvement and a late plateau. Final WeeFIM scores ranged from 18 to 125 (median 105, IQR 87–117). The time taken to reach 50% final WeeFIM score ranged from 5 to 145 days (median 27, IQR 17–46). Both final WeeFIM and time to reach 50% final WeeFIM correlated with time to follow commands (TFC), defined as the post-injury day on which a child was first observed to follow two simple commands in a 24 h period. Conclusions Simple models predicting outcome trajectory can be built incorporating early rate-ofrecovery indices (such as TFC) as proxies of injury severity. Such models allow informed discussion with families of likely rates of progress and the CI on these estimates. Models of this nature also potentially allow identification of children making better- or worse-thanexpected recoveries.