Cognitive Orientation to daily Occupational Performance to improve occupational performance goals for children with executive function deficits after acquired brain injury.

AIM: To determine the effectiveness of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach in improving the occupational performance goals of children and young people with executive function deficits after acquired brain injury (ABI) (e.g. etiologies such as stroke, encephalitis, brain tumor, and traumatic brain injury). METHOD: A replicated single-case experimental study using a randomized multiple baseline design across participants and goals was used. Three clusters of four participants (12 participants, nine males and three females, aged 8-16 years) were included. The intervention consisted of 14 individual CO-OP sessions. Each participant chose four goals; three goals were trained during the intervention sessions and a fourth goal served as the control. The Goal Attainment Scale (GAS) was used as a repeated measure to determine goal achievement while the Canadian Occupational Performance Measure (COPM) was used to identify the perceived goal achievement of children, young people, and their parents. RESULTS: For 26 of the 35 trained goals, the intervention led to statistically significant improvements in the GAS. Perceived occupational performance and satisfaction improved significantly for the trained goals (30 out of 35 goals for the COPM performance and satisfaction of participants; 26 out 31 goals for the COPM performance of parents; 24 out of 31 goals for the COPM satisfaction of parents) and were maintained at the follow-up. Almost all COPM control goal results were significant, but these changes were not supported by the GAS measures or the statistical analysis. INTERPRETATION: The generally positive results of this study provide evidence of the benefits of using the CO-OP approach with this population.

Evolution of dizziness-related disability in children following concussion: a group-based trajectory analysis.

OBJECTIVE: This study aimed to identify Dizziness-Related Disability (DRD) recovery trajectories in pediatric concussion and assess clinical predictors of disability groups. MATERIALS AND METHODS: In this prospective cohort study, 81 children (8-17 years) diagnosed with an acute concussion took part in 3 evaluation sessions (baseline, 3-month, and 6-month). All sessions included the primary disability outcome, the Dizziness Handicap Inventory (DHI) to create the DRD recovery trajectories using group-based multi-trajectory modeling analysis. Each independent variable included general patients' characteristics, premorbid conditions, function and symptoms questionnaires, and clinical physical measures; and were compared between the trajectories with logistic regression models. RESULTS: Low DRD (LD) trajectory (n = 64, 79%), and a High DRD (HD) trajectory (n = 17, 21%) were identified. The Predicting and Preventing Postconcussive Problems in Pediatrics (5P) total score (Odds Ratio (OR):1.50, 95% Confidence Interval (CI): 1.01-2.22), self-reported neck pain (OR:7.25, 95%CI: 1.24-42.36), and premorbid anxiety (OR:7.25, 95%CI: 1.24-42.36) were the strongest predictors of belonging to HD group. CONCLUSIONS: Neck pain, premorbid anxiety, and the 5P score should be considered initially in clinical practice as to predict DRD at 3 and 6-month. Further research is needed to refine predictions and enhance personalized treatment strategies for pediatric concussion.

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.

The 20-item dysexecutive questionnaire after severe traumatic brain injury: Distribution of the total score and its significance.

TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01437683..

CO-OP Approach With Children and Youth With Executive Function Deficits After Acquired Brain Injury: A Qualitative Study of Care Partners' Involvement.

IMPORTANCE: Care partners' involvement is a key feature of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach that can enhance rehabilitation outcomes and promote the generalization and transfer of strategies and skills to everyday life. Gaining insight into care partners' experience with their child's CO-OP intervention is critical to understanding how to enhance care partners' involvement. OBJECTIVE: To gain insight into the experience of care partners whose child with acquired brain injury (ABI) participated in CO-OP intervention. METHOD: A qualitative descriptive research design was used. Semistructured interviews were conducted at three time points (immediate postintervention and at 2 and 6 mo postintervention). SETTING: Two rehabilitation centers. PARTICIPANTS: Thirteen care partners of 12 children or youth with severe ABI. RESULTS: Three themes emerged from the analysis of 33 interviews: (1) The child is an active agent in their therapy, (2) the care partner is the keystone who helps solidify the elements of CO-OP, and (3) CO-OP mastery requires time and practice, and its use evolves over time. CONCLUSIONS AND RELEVANCE: These themes highlight the progressive nature of proficiency in CO-OP for both care partners and children. This was evident not only in the children's improvement in task performance, but also in their ability to problem solve. Care partners' role in supporting the CO-OP approach also unfolds over time as their confidence in their child's problem-solving abilities, and in their own ability to adequately provide guidance, increases. Engagement seems to be central in facilitating this progression for both children and their care partners. Plain-Language Summary: This is the first study to provide insights into the involvement of care partners in the Cognitive Orientation to daily Occupational Performance (CO-OP) approach for children and youth with executive function deficits after acquired brain injury. This is also the first study to explore the evolution of care partners' experiences over time. Involving care partners is a key feature of the CO-OP. Understanding care partners' experiences with their child's CO-OP intervention can improve a child's rehabilitation outcomes. The study found that care partners' role in supporting their child's CO-OP approach improved over time as their confidence in their child's problem-solving abilities increased. The care partners' own ability to adequately provide guidance to their child also increased over time. Engagement seems to be central in facilitating this progression for both children and their care partners. It is hoped that occupational therapists will consider the findings of this study to better support care partners in implementing the CO-OP approach with their child in their real-life context.

Transatlantic progress in measurement of cognitive outcomes in paediatric oncology trials.

The importance of measuring quality of survival within paediatric oncology trials is increasingly recognised. However, capturing neuropsychological outcomes and other aspects of quality of survival in the context of large or multinational trials can be challenging. We provide examples of protocols designed to address this challenge recently employed in clinical trials in the USA and Europe. We discuss their respective strengths and challenges, obstacles encountered and future opportunities for transatlantic collaboration.

The impact of childhood acquired brain injury on siblings: a scoping review.

OBJECTIVE: (a) To analyze the extent and nature of research on the impact of childhood acquired brain injury (ABI) on siblings, (b) to synthetize in a descriptive way the results of these studies and propose perspectives of care/support. METHOD: A literature search of 3 databases was performed up to August 2022. Studies addressing issues around siblings of children with ABI were included in the scoping review. RESULTS: 25 articles were identified and analyzed. Results indicate that there is a paucity of research on this issue. However, interest in the subject has increased over past decades. Despite variable results, the current literature highlights the negative impact of ABI on family functioning and relationships. The trajectory and quality of life of siblings of children with ABI are modified. ABI causes intense and mixed emotions, psychological distress, behavioral difficulties and social stigma. Siblings have varied ways of coping with ABI and express particular needs that must be addressed. CONCLUSION: There is a significant impact of childhood ABI on siblings' subsequent life. Existing studies on this subject are few, heterogeneous, and sometimes contradictory. Further studies on this theme therefore appear necessary in order to propose appropriate support for patients' siblings according to their age and situation.

Virtual-Reality Performance-Based Assessment of Cognitive Functions in Adult Patients With Acquired Brain Injury: A Scoping Review.

Individuals with acquired brain injury (ABI) commonly present with impairments in cognitive abilities. As these competencies seem to be predictive of patients' abilities to reintegrate into the everyday settings, it is crucial to assess them properly. However, previous research has indicated that patients may perform relatively well on standard tests of cognitive functioning, but may nonetheless encounter significant difficulties in organizing and executing everyday tasks. In order to overcome this issue, virtual reality (VR) methods have been introduced in clinical practice with the aim of creating assessments that simulate real-world activities and thus, provide a clearer picture of patients' functioning in everyday settings. This review offers an overview of VR assessment tools described in the scientific literature between 2010 and 2019. Overall, 38 relevant records describing 31 different tools were found. Among these tools, 16 assessed executive functions and prospective memory, while the other 15 assessed visuo-spatial abilities. Although promising results have been reported, our analysis indicated that about half of the tools deliver tasks that differ from everyday activities, thus limiting the generalizability of patients' performance to the real-world. Moreover, a variety of methodological shortfalls related to study Internal and External Validity have been highlighted, which hamper the possibility of drawing definite recommendations on tool choice. These limitations suggest the importance of putting considerable efforts into the improvement or development of VR tools for patients with ABI for both research and clinical purposes, considering the great potential of this form of assessment.

The Cardiac Autonomic Response Recovery to the Modified Tilt Test in Children Post Moderate-Severe Traumatic Brain Injury.

OBJECTIVE: To assess the recovery of the cardiac autonomic control system (CACS) response to the modified tilt-test during rehabilitation, in children post moderate-severe TBI at the subacute phase post-injury. METHOD: Thirty-seven children aged 6-18 years, 14-162 days post moderate-severe TBI, participated in the study. The assessment included CACS values evaluation (heart rate (HR), heart rate variability (HRV) and blood pressure) during the modified tilt-test: five minutes lying supine and five minutes passive standing. Re-assessment was performed after eight weeks of rehabilitation. RESULTS: In both assessments, only four children reported symptoms associated with orthostatic intolerance during the modified tilt-test. No change was found over time in the HR and HRV values at rest. In response to the modified tilt-test, the systolic blood pressure showed change over time, with a significant interaction effect (p=0.04); while in the first assessment the SBP values showed a hypertension trend in the second assessment the SBP values showed a hypotension trend. CONCLUSIONS: Children post moderate-severe TBI at the sub-acute phase post-injury, have a better systolic blood pressure response during the modified tilt-test after eight weeks of individually tailored rehabilitation program, despite no change in the CACS values at rest. CLINICAL TRIAL GOV. NUMBER: NCT03215082.

The development and the inter-rater agreement of a treatment protocol for vestibular/oculomotor rehabilitation in children and adolescents post-moderate-severe TBI.

Introduction:There is limited evidence investigating the effect of vestibular/oculomotor rehabilitation programs in children and adolescents post moderate-severe TBI at the sub-acute stage.Objective:To describe the development of a treatment protocol for vestibular/oculomotor interventions in this population, and to assess the inter-rater agreement of this protocol as an initial step of a clinical trial.Method:The protocol was developed by 10 health professionals, address the high variability of balance performance, the high prevalence of vestibular/oculomotor abnormalities and the low prevalence of symptoms reported in this population.Results:The protocol enables the clinician to use the assessment during the treatment exercise selection. The training position was defined by the Pediatric Balance Scale. Vestibular/oculomotor exercises were selected using a quantified version of the Vestibular/Ocular Motor Screening. The exercise protocol was selected based on impairment in function or reproduction of symptoms. The protocol planning was implemented by two assessors in 27 children and adolescents post-moderate-severe TBI (median age 14.1 [6-18.4] years) in the sub-acute stage (median 40 [14-162] days since injury). Very high agreement was found (k > 0.72) in all the parameters.Conclusion: This protocol could reliably be used in a randomized control trial that assesses the effect of vestibular/oculomotor rehabilitation program in children and adolescents post moderate-severe TBI at the sub-acute stage.

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).

The integrated functions of the cardiac autonomic and vestibular/oculomotor systems in adolescents following severe traumatic brain injury and typically developing controls.

INTRODUCTION: The cardiac autonomic control system (CACS) is frequently impaired post-traumatic brain injury (TBI). However, the prevalence of vestibular/oculomotor impairment is less studied. These two systems interact during position change and contribute to blood-pressure regulation through the vestibulo-sympathetic reflex. Aim: To assess the CACS, the vestibular/oculomotor systems and their integrative function in adolescents post-TBI compared to typically-developing (TD) adolescents. Methods: 19 adolescents in the subacute stage following a severe TBI (14-117 days post injury) and 19 age and sex matched TD controls were recruited. Heart Rate Variability (HRV) was assessed at rest and during a modified tilt-test. A quantified version of the Vestibular/Ocular-Motor Screening (VOMS) was also administered. Results: At rest, the TBI group had higher HR and lower HRV values (p < .001). All participants with TBI demonstrated impairments in the VOMS (median of positive tests: 5 [range 2-9]) compared to only 6 out of 19 in the TD participants (median 0 [0-2]) (z = -5.34; p < .001). In response to the modified tilt test, the HRV increased significantly in the lifting period and decreased significantly once in standing only in the TBI group (z = -2.85, p = .025). Conclusion: Adolescents post severe TBI demonstrated impairments in the CACS, positive tests on the VOMS and significantly greater changes in the modified tilt test as compared to TD. Clinical trial gov. number: NCT03215082.

Assessment of everyday executive functioning using the BRIEF in children and adolescents treated for brain tumor.

Objective: Childhood brain tumors (BTs) and their treatment often negatively affect development of executive functions. Previous studies have reported executive functions deficits, particularly through questionnaires of daily life. This study aimed to assess executive functioning in everyday life following pediatric BT, in a larger and more histologically diverse sample than previously, and to study clinical and demographic factors influencing outcome.Methods: Assessment of executive functioning using parent ratings of the Behavior Rating Inventory of Executive Function (BRIEF), in a large sample of children treated for various BT (n = 153). Clinical and demographic factors were: age at diagnostic, age at assessment, parental education level, radiation therapy.Results: Significant difficulties were found in the 3 composite indices and in the majority of the BRIEF subscales. The highest level of difficulties was observed in the Working Memory subscale. Older age at assessment and younger age at diagnosis were significantly associated with higher levels of parent-reported difficulties, particularly for metacognition.Conclusions: Parents of children treated for BT report widespread and persistent deficits in executive functions that negatively affect their everyday functioning. Including analysis of all clinical scales and composite indices allows a more comprehensive approach and enables to specify the patients' executive profile.

Language, intellectual and educational outcomes after moderate-to-severe traumatic brain injury sustained before the age of 18 months.

Objective: The aim of this study was to assess long-term outcomes in terms of oral language, intellectual ability, education, following very early moderate-to-severe TBI. Methods: Children who had been hospitalized in rehabilitation after moderate-to-severe TBI sustained before 18 months of age were contacted once they had reached school age. Detailed oral language and intellectual ability assessment were performed, and information on ongoing education was collected. Results: 52 children met inclusion criteria; 21 (40.4%) participated [13 males, mean age 7.5 years (SD = 1.9), age at injury 0.7 years (SD = 0.5), time since injury 6.8 years (SD = 1.8)]. Performance was in the clinical range (<-2SD) for: syntactic comprehension (67%; mean z-scores -2.6; SD = 3.1), syntactic expression (62%; -2.1; SD = 1.3), lexical stock extent (57%; -1.5; SD = 1.5), lexical access skills (48%; -1.9; SD = 2), and semantic organization (32%; -0.9; SD = 1.2). Full-scale IQ was <90 for 91%. Only eight children followed mainstream education without adaptations. Performance on all language tests (except lexical stock extent) was significantly poorer for children with a personal school aid or those in specialized education. Conclusions: Early moderate-to-severe TBI causes significant delayed language (especially syntactic aspects of language) and cognitive disabilities, with consequences on long-term educational outcome. These children require long-term follow-up and timely interventions.

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.

Assessment of executive functions in children and adolescents with acquired brain injury (ABI) using a novel complex multi-tasking computerised task: The Jansari assessment of Executive Functions for Children (JEF-C©).

Objectives: The Jansari assessment of Executive Functions for Children (JEF-C©) is a new non-immersive computerised assessment of executive functions. The objectives of the study were to test the feasibility and validity of JEF-C© in children and adolescents with acquired brain injury (ABI). Methods: Twenty-nine patients with ABI aged 10-18 years and 30 age-and gender-matched controls were tested. Participants performed JEF-C©, Wechsler Abbreviated Scale of Intelligence (WASI) and the Behavioural Assessment of the Dysexecutive Syndrome for Children (BADS-C), while parents completed the Behaviour Rating Inventory of Executive Function (BRIEF) questionnaire. Results: The JEF-C© task proved feasible in patients with ABI. The internal consistency was medium (Cronbach's alpha = 0.62 and significant intercorrelations between individual JEF-C© constructs). Patients performed significantly worse than controls on most of the JEF-C© subscales and total score, with 41.4% of participants with ABI classified as having severe executive dysfunction. No significant correlations were found between JEF-C© total score, the BRIEF indices, and the BADS-C. Significant correlations were found between JEF-C© and demographic characteristics of the sample and intellectual ability, but not with severity/medical variables. Conclusion: JEF-C© is a playful complex task that appears to be a sensitive and ecologically valid assessment tool, especially for relatively high-functioning individuals.

Maternal stress and pediatric brain cancer: A French study.

BACKGROUND: Despite evidence that pediatric cancer induces a trajectory of parental stress, studies including mothers of children with malignant brain tumors remain scarce. The present work aims to add to the scientific literature by evaluating maternal stress with a French translation of the Pediatric Inventory for Parents (PIP) in a population of mothers whose children have been diagnosed with a brain tumor. PROCEDURE: The mothers of 35 children with malignant brain tumors completed the Pediatric Inventory for Parents (PIP), the State-Trait Anxiety Inventory (STAI) and the Family Assessment Device (FAD) at a mean time since diagnosis of 2.3 years. RESULTS: The PIP showed good internal consistency and correlated significantly with the STAI and the FAD. Maternal stress scores were higher in younger mothers and in mothers of younger children. Emotional functioning was the most affected domain. CONCLUSIONS: Emotional stress as assessed by the PIP in mothers of children with malignant brain tumors is considerable, and should be routinely assessed, in order to implement appropriate specific psychosocial interventions when needed.

Biological material collection to advance translational research and treatment of children with CNS tumours: position paper from the SIOPE Brain Tumour Group.

Paediatric CNS tumours are the most common cause of childhood cancer-related morbidity and mortality, and improvements in their diagnosis and treatment are needed. New genetic and epigenetic information about paediatric CNS tumours is transforming the field dramatically. For most paediatric CNS tumour entities, subgroups with distinct biological characteristics have been identified, and these characteristics are increasingly used to facilitate accurate diagnoses and therapeutic recommendations. Future treatments will be further tailored to specific molecular subtypes of disease, specific tumour predisposition syndromes, and other biological criteria. Successful biomaterial collection is a key requirement for the application of contemporary methodologies for the validation of candidate prognostic factors, the discovery of new biomarkers, the establishment of appropriate preclinical research models for targeted agents, a quicker clinical implementation of precision medicine, and for other therapeutic uses (eg, for immunotherapies). However, deficits in organisational structures and interdisciplinary cooperation are impeding the collection of high-quality biomaterial from CNS tumours in most centres. Practical, legal, and ethical guidelines for consent, storage, material transfer, biobanking, data sharing, and funding should be established by research consortia and local institutions to allow optimal collection of primary and subsequent tumour tissue, body fluids, and normal tissue. Procedures for the collection and storage of biomaterials and related data should be implemented according to the individual and organisational structures of the local institutions.