Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l'Enfant (TGE) study.

OBJECTIVE: To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l'Enfant) longitudinal study. METHODS: Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child's level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, 'objective' (e.g. overall level of disability: Glasgow Outcome Scale - Extended, GOS-E/GOS-E-Peds) and 'subjective' outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue). RESULTS: 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all 'subjective' PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a 'negative' picture of their child. CONCLUSION: Significant PFC-reported burden 7-years post-injury was associated with overall disability and 'subjective' PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.

Self- and parent-reported Quality of Life 7 years after severe childhood traumatic brain injury in the Traumatisme Grave de l'Enfant cohort: associations with objective and subjective factors and outcomes.

PURPOSE: To investigate self- and parent-reported Health-Related Quality-of-Life (HRQoL) and their associations after severe childhood traumatic brain injury (TBI) in the Traumatisme Grave de l'Enfant (TGE) cohort. METHODS: Self- (n = 34) and/or parent-reports (n = 25) of HRQoL were collected for 38 participants (age 7-22 years) 7 years after severe childhood TBI. The collected data included sociodemographic characteristics, injury severity indices, and overall disability and functional outcome at 3-months, 1- and 2-years post-injury. At 7-years post-injury, data were collected in the TBI group and in a control group (n = 33): overall disability (Glasgow Outcome Scale Extended), intellectual ability (IQ), and questionnaires assessing HRQoL (Pediatric Quality of Life Inventory), executive functions (Behavior Rating Inventory of Executive Functions), behavior (Child Behavior Checklist), fatigue (Multidimensional Fatigue Scale) and participation (Child and Adolescent Scale of Participation). RESULTS: Parent- and self-reports of HRQoL were significantly lower in the TBI group than in the control group. Parent-rated HRQoL was not associated with objectively assessed factors, whereas self-reported HRQoL was associated with gender (worse in females) and initial functional outcome. All questionnaire scores completed by the same informant (self or parent) were strongly inter-correlated. CONCLUSIONS: Reported HRQoL 7-years after severe childhood TBI is low compared to controls, weakly or not-related to objective factors, such as injury severity indices, clinically assessed functional outcomes, or IQ, but strongly related to reports by the same informant of executive deficits, behavior problems, fatigue, and participation.

Self- and Parent-Reported Fatigue 7 Years After Severe Childhood Traumatic Brain Injury: Results of the Traumatisme Grave de l'Enfant Prospective Longitudinal Study.

OBJECTIVE: To investigate presence of and factors associated with self- and parent-reported fatigue 7 years after severe childhood traumatic brain injury (TBI) in the prospective longitudinal study TGE (Traumatisme Grave de l'Enfant-severe childhood trauma). METHODS: Self-reports and/or parent reports on the Multidimensional Fatigue Scale were collected for 38 participants (aged 7-22 years) 7 years after severe childhood TBI, and 33 controls matched for age, gender, and parental educational level. The data collected included sociodemographic characteristics, age at injury and injury severity scores, overall disability (Glasgow Outcome Scale Extended), intellectual outcome (Wechsler scales), and questionnaires assessing executive functions, health-related quality of life, behavior, and participation. RESULTS: Fatigue levels were significantly worse in the TBI than in the control group, especially for cognitive fatigue. Correlations of reported fatigue with age at injury, gender, TBI severity, and intellectual ability were moderate and often not significant. Fatigue was significantly associated with overall level of disability (Glasgow Outcome Scale Extended) and with all questionnaires completed by the same informant. CONCLUSION: High levels of fatigue were reported by 30% to 50% of patients 7 years after a severe childhood TBI. Reported fatigue explained more than 60% of the variance of reported health-related quality of life by the same informant (patient or parent).

Assessment of memory functioning over two years following severe childhood traumatic brain injury: results of the TGE cohort.

The aims of this study were (1) to prospectively measure memory functioning following severe childhood Traumatic Brain Injury (TBI), and its evolution over 2 years; (2) to assess demographic and medical factors associated with memory function and recovery; (3) to explore relations between memory and other TBI outcomes. Methods: Children (aged 0-15 years; n= 65) consecutively admitted in a single trauma center over a 3-year period, who survived severe non-inflicted TBI, were included in a prospective longitudinal study. Memory was assessed in 38 children aged 5-15 years at injury, using the Children's Memory Scale at 3, 12, and 24 months post-injury. Results: Mean general memory score was low at 3 months (M = 90.2, SD = 20.3) but within the normal range at 12 and 24 months (M = 100.6, SD = 23.1 and M = 108.6, SD = 24.1, respectively), with high variability. Improvement was stronger for immediate visual memory than for other memory indices. Lower general memory score was associated with higher injury severity, lower intellectual ability and functional status, higher overall disability, and ongoing education. Conclusion: Memory functioning is highly variable following severe childhood TBI, related to injury severity and functional, cognitive and educational outcomes; improvement is significant during the first-year post-injury, but varies according to the type of memory.

Behavior problems 7 years after severe childhood traumatic brain injury: Results of the Traumatisme Grave de L'Enfant study.

PURPOSE/OBJECTIVE: To investigate the occurrence of behavioral problems 7 years after severe pediatric traumatic brain injury (TBI), and their evolution from 3 months to 7 years postinjury. METHOD/DESIGN: Thirty-four participants, 38% girls, M (SD) age at injury 7.6 (4.7) years, age at assessment 15 (4.6) years, underwent comprehensive assessments 7 years after severe TBI from March 2014 to March 2016 and were matched to a control group by age, gender, and parental education. A subgroup of 20 participants had available behavioral assessments at 3, 12, and 24 months postinjury. Internalizing, externalizing, and total behavioral problems were assessed with self- and parent reports of the Achenbach's Behavioral Checklist. Additional data included sociodemographic background, initial injury severity, and specific outcomes assessed concurrently 7 years postinjury. RESULTS: Compared to controls: (a) a significant proportion of participants with severe TBI fell above the clinical cutoff for self- (42%) and parent-reported (36%) externalizing problems, but not for self- (33%) or parent-reported (45%) internalizing problems; (b) withdrawn/depressed, intrusive behavior, and somatic complaints were significantly higher in self-reports; and (c) rule-breaking behavior, attention, and social problems were significantly higher in parent reports. Parent-reported internalizing problems were associated with older age at injury, whereas externalizing problems correlated with greater injury severity and concurrent levels of greater overall disability, lower intellectual ability, and poorer family functioning. In multiple hierarchical regression analyses, overall disability and worse family functioning significantly predicted externalizing problems. Parent-reported internalizing and externalizing problems persisted over time. CONCLUSIONS/IMPLICATIONS: These results highlight the importance of long-term follow-up and individualized behavioral interventions for children who sustained severe TBI. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Weight gain after childhood traumatic brain injury: a matter of concern.

AIM: The aim of the study was to assess weight changes after traumatic brain injury (TBI) in children and the factors influencing them. METHOD: We conducted a longitudinal observational study of children with TBI of mixed severity who were consecutively admitted to one rehabilitation department (39 children; 23 males, 16 females; median age 8y 7mo; 25th to 75th centiles 3y 7mo-11y 6mo). Weight and height before TBI were obtained from the children's records and were measured monthly for 1 year after TBI. Body mass index (BMI) and BMI z-scores were calculated, and pre-TBI values were compared with the final values using paired tests. Linear mixed-effect interaction models were used to assess the effect of various factors on z-score evolution. RESULTS: Z-score curves revealed early weight loss followed by a rapid increase in weight. The mean BMI gain over the period under study was 0.9 kg/m² (p < 0.001) and the mean z-score gain was 0.4 (p = 0.006). Six children had become overweight by the time of final assessment. Factors associated with a greater rate of increase in the post-TBI z-score were mobility restriction, male sex, and older age. Global pre- to post-TBI weight gain was significantly higher in males (z-score 0.7). Pituitary hormonal testing was available for 17 children at 3 months and for 27 at 1 year. Growth hormone deficiency was detected in one child. INTERPRETATION: Weight gain of children during the first year after TBI was rapid and excessive. Male sex was a risk factor for excessive weight gain.

Functional status 1 year after severe childhood traumatic brain injury predicts 7-year outcome: Results of the TGE study.

BACKGROUND: Childhood severe traumatic brain injury (TBI) is a leading cause of long-lasting acquired disability, but predicting long-term functional outcome remains difficult. OBJECTIVES: This study aimed to 1) describe the functional outcome at 1 and 7 years post-TBI; 2) determine the initial and concurrent factors associated with long-term outcome; and 3) evaluate the predictive value of functional status, overall disability level and intellectual ability measured at 1 year post-injury to determine 7-year clinically meaningful outcomes. METHODS: Among the children (<16 years) consecutively included over 3 years in the Traumatisme Grave de l'Enfant (TGE) prospective longitudinal cohort study after accidental severe TBI, we studied the outcomes of 39 survivors at 1 and 7 years post-injury. Overall outcome included disability level (Glasgow Outcome Scale), functional status (Pediatric Injury Functional Outcome Scale), intellectual ability (Wechsler scales), executive functions (Behavior Rating Inventory of Executive Functions), behavior (Child Behavior Checklist) as well as neurological impairments and academic status. RESULTS: Mean (SD) age of the 39 survivors at injury was 7.6 (4.6) years, and long-term evaluation was conducted at a mean of 7.8 years post-injury (range 5.9-9.3); 36% of participants were adults (≥18 years old). Most of the neurological impairments remained stable beyond 1 year after TBI, whereas overall disability level improved significantly from 1 to 7 years but remained highly variable, with almost half of participants presenting significant disability levels (moderate: 26%, or severe: 21%). Almost half of participants had significant cognitive, behavior and/or academic difficulties at 7 years post-TBI. On multivariate regression analysis, functional impairment at 1 year was the best predictor of severe disability at 7 years (F(3,31)=13.18, p < 0.001, sensitivity=100%, specificity=78%). CONCLUSIONS: Our results confirm the significant long-term impact of childhood severe TBI. All children with TBI should benefit from systematic follow-up, especially those with persistent functional deficits at 1 year post-injury, because the severity of functional impairment at 1 year seems the best predictor of long-term significant disability up to 7 years post-TBI.

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.

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.

Memory functioning 7 years after severe childhood traumatic brain injury: Results of the Traumatisme Grave de l'Enfant study.

OBJECTIVE: To explore memory functioning 7 years after severe paediatric traumatic brain injury (TBI), associated factors, and relationships with other outcomes. METHOD: Children aged 0-15 years (n = 65), consecutively admitted over a 3-year period in a single trauma centre, who survived after severe non-inflicted TBI, were included in a prospective longitudinal study. Memory assessments were performed 7 years post-injury using the Children's Memory Scale or the Wechsler Memory Scale (WMS IV), according to age. The General Memory Score (GMS-7) was the primary outcome. RESULTS: Thirty-seven patients were available for assessment at 7 years post-injury. Mean GMS-7 was in the low average range (M = 84.9, SD = 12.1). Lower GMS-7 was significantly associated with markers of higher injury severity, such as length of coma. One year post-injury functional and disability outcomes explained 74% of the variance of GMS-7. Concurrent intellectual ability and type of ongoing education correlated strongly with GMS-7. Age at injury and parental education were not associated with memory outcome. CONCLUSIONS: Memory functioning is variable but often strongly impaired several years after severe paediatric TBI, and is mostly related to injury severity, functional outcomes measured 1 year post-injury, and concomitant cognitive and educational outcomes. GMS-7 was lower at 7 years than one year post-injury, supporting the importance of long term follow-up.

Functional outcome after severe childhood traumatic brain injury: Results of the TGE prospective longitudinal study.

BACKGROUND: Childhood severe traumatic brain injury (TBI) is a leading cause of long-lasting acquired disability, but little is known about functional outcome. OBJECTIVE: We aimed to 1) study clinical recovery and functional outcome over 24 months after severe childhood TBI, 2) identify early sociodemographic and severity factors influencing outcome, and 3) examine the clinical utility of the Pediatric Injury Functional Outcome Scale (PIFOS) to assess functional outcome. METHODS: Children (0-15 years) consecutively admitted in a trauma centre after accidental severe TBI over 3 years were included in a prospective longitudinal study (Traumatisme Grave de l'Enfant cohort). We measured clinical/neurological recovery, functional status (Pediatric Injury Functional Outcome Scale, [PIFOS]), overall disability (pediatric Glasgow Outcome Scale [GOS-Peds]) as well as intellectual ability (Wechsler scales) and educational outcome (mainstream school vs special education) of survivors at 1, 3, 12 and 24 months post-injury. RESULTS: For 45 children (aged 3 to 15 years at injury), functional impairments were severe within the first 3 months. Despite the initial rapid clinical recovery and significant improvement over the first year, substantial alterations persisted for most children at 12 months post-TBI, with no significant improvement up to 2 years. Up to 80% of children still had moderate or severe overall disability (GOS-Peds) at 24 months. The severity of functional impairments (PIFOS) at 12 and 24 months was mostly related to socio-emotional, cognitive and physical impairments, and was significantly correlated with clinical/neurological deficits and cognitive (intellectual, executive) and behavioural disorders. Initial TBI severity was the main prognostic factor associated with functional status over the first 2 years post-injury. CONCLUSIONS: Our results confirm the significant impact of severe childhood TBI on short- and medium-term functional outcomes and overall disability. All patients should benefit from systematic follow-up. The PIFOS appeared to be an accurate and reliable tool to assess functional impairment evolution and clinically meaningful outcomes over the first 2 years post-injury.

Participation seven years after severe childhood traumatic brain injury.

Purpose: Participation in home, school and community activities is considered as the ultimate aim of rehabilitation. The aims of this study were to examine participation seven years post-severe childhood traumatic brain injury and factors associated with participation.Materials and methods: Participants were enrolled in the Traumatisme Grave de l'Enfant (Severe Childhood Injury) cohort study following severe accidental childhood traumatic brain injury. Participation seven years post-injury, was examined using parent- and self-report forms of the Child and Adolescent Scale of Participation among 37 patients [62% males, mean age 15.4 years (SD = 4.4), mean length of coma 6.68 days (SD = 4.96)] and 33 matched controls.Results: Parent reports indicated significantly lower participation among patients compared to controls, but the self-reports did not. In the traumatic brain injury group, parent-reported participation was variable, with 22% of the patients clearly showing greater restrictions than controls. Participation restrictions were significantly associated with injury severity, poor functional outcome one-year post-injury, executive and behavioral difficulties and higher fatigue levels seven years post-injury, but not with pre-injury nor family factors.Conclusions: Several years after severe childhood traumatic brain injury, participation appears to depend more on injury-related factors than on environmental factors. In self-reports assessments of participation, it could be difficult for children and adolescents to distinguish capacity from performance.Implications for rehabilitationParticipation outcomes were highly variable in a sample of patients who sustained severe childhood traumatic brain injury.Participation should be assessed systematically following severe traumatic brain injury, both initially but also in the long-term, ideally using a combination of self- and proxy-report measures.Among patients with severe injuries, the influence of initial brain injury severity markers on participation seems much stronger than that of social/family environment factors.Children's and adolescents' self-reported participation assessed with the Child and Adolescent Scale of Participation may be difficult to interpret.

Executive functions and attention 7years after severe childhood traumatic brain injury: Results of the Traumatisme Grave de l'Enfant (TGE) cohort.

OBJECTIVES: Severe childhood traumatic brain injury (TBI) leads to long-standing executive function and attention deficits, with negative consequences for participation, academic outcome and independence. This study aimed to assess executive function and attention 7 years after severe childhood TBI in comparison with a matched control group and to investigate associated factors. METHODS: Children (<15years) with severe accidental TBI consecutively admitted in a single trauma center over 3years were included in the Traumatisme Grave de l'Enfant (TGE) prospective longitudinal study. Of the 81children initially included, 65survived. At 7years post-TBI, executive functions and attention were assessed in 27participants (42 % of the 65 survivors) by using a combination of computerized tasks from the Test of Attentional Performance (TAP) and the Behavioral Rating of Executive Functions (BRIEF) questionnaire. Patients were compared to a group of 27typically developing controls who were matched for sex, age and parental education level. RESULTS: Among the 27participants, mean (SD) age at injury was 7.7 (4.6)years, and mean length of coma 5.6 (4.6) days. Regarding the TAP, the number of errors was significantly higher (P=0.003) and reaction time marginally slower (P=0.08) in the TBI than control group. The BRIEF questionnaire completed by parents indicated significantly more executive difficulties in the TBI than control group (Behavior Regulation Index, P=0.005; Metacognitive index, P=0.02; Global Executive Composite, P=0.012). Correlations between BRIEF and TAP scores did not reach statistical significance. BRIEF total score was correlated moderately with length of coma (r=0.40, P=0.037), and TAP scores were correlated with the Full-Scale Intellectual Quotient (total number of errors: r=-0.48; P=0.01; mean reaction time: r=-0.51; P=0.009). CONCLUSIONS: Executive and attention deficits were evident 7 years after severe childhood TBI. Computerized tasks and questionnaires provide complementary and non-redundant information. Systematic long-term follow-up should be provided until the transition to adulthood, to assess ongoing development and to implement timely tailored interventions.

Prospective memory 7 years after severe childhood traumatic brain injury - the TGE 2 prospective longitudinal study.

OBJECTIVE: To investigate the long-term outcome in prospective memory (PM), seven years after childhood severe traumatic brain injury (TBI), in a prospective longitudinal cohort. PARTICIPANTS: 76 young individuals (aged 7-22 years): 39 patients with a severe accidental TBI included prospectively seven years earlier, aged 0-15 years at injury, and 37 controls individually matched on age, gender and parental education. MAIN OUTCOME MEASURES: Three novel short PM tasks varying in the delay, motivation and context (ecological versus paper and pencil task). RESULTS: Individuals with severe TBI showed significantly poorer PM than matched controls in the two low-motivation PM tasks: (1) the ecological long-delay task consisting of sending a letter on a rainy day (p=0.047, odds ratio = 2.6); (2) the non-ecological short-delay task consisting of taking off post-its while identifying facial emotions (p=0.004, r=0.34). Differences in PM on the high motivation were not significant. PM is impaired several years post severe TBI.

Extended follow-up of neurological, cognitive, behavioral and academic outcomes after severe abusive head trauma.

Studies about long-term outcome following abusive head trauma (AHT) are scarce. The aims of this study were to report long-term neurological, cognitive, behavioral and academic outcomes, ongoing treatments and/or rehabilitation, several years after AHT diagnosis, and factors associated with outcome. In this retrospective study, all patients admitted to a single rehabilitation unit following AHT between 1996 and 2005, with subsequent follow-up exceeding 3 years, were included. Medical files were reviewed and a medical interview was performed with parents on the phone when possible. The primary outcome measure was the Glasgow Outcome Scale (GOS). Forty-seven children (out of 66) met the inclusion criteria (mean age at injury 5.7 months; SD=3.2). After a median length of follow-up of 8 years (range 3.7-12), only seven children (15%) had "good outcome" (normal life - GOS I) and 19 children (40%) presented with severe neurological impairment (GOS III and IV). Children sustained epilepsy (38%), motor deficits (45%), visual deficit (45%), sleep disorders (17%), language abnormalities (49%), attention deficits (79%) and behavioral disorders (53%). Most children (83%) had ongoing rehabilitation. Only 30% followed a normal curriculum, whereas 30% required special education services. Children with better overall outcome (GOS I and II) had significantly higher educated mothers than those with worse outcomes (GOS III and IV): graduation from high school 59% and 21% respectively (p=0.006). This study highlights the high rate of severe sequelae and health care needs several years post-AHT, and emphasizes the need for extended follow-up of medical, cognitive and academic outcomes.