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1.
Dev Med Child Neurol ; 66(4): 501-513, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37792283

RESUMO

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.


Assuntos
Lesões Encefálicas , Função Executiva , Adolescente , Criança , Feminino , Humanos , Masculino , Lesões Encefálicas/complicações , Canadá , Objetivos , Orientação
2.
Brain Inj ; 38(6): 467-478, 2024 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-38379310

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas , Lesões Encefálicas , Adulto , Humanos , Criança , Estudos Longitudinais , Qualidade de Vida/psicologia , Cuidadores/psicologia , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas/complicações
3.
Pediatr Blood Cancer ; 70(5): e30171, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36734371

RESUMO

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.


Assuntos
Oncologia , Neoplasias , Criança , Humanos , Europa (Continente) , Neoplasias/tratamento farmacológico , Cognição
4.
Brain Inj ; 37(6): 503-516, 2023 05 12.
Artigo em Inglês | MEDLINE | ID: mdl-36915031

RESUMO

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.


Assuntos
Lesões Encefálicas , Angústia Psicológica , Criança , Humanos , Irmãos/psicologia , Qualidade de Vida , Lesões Encefálicas/psicologia , Adaptação Psicológica
5.
Neuropsychol Rev ; 32(2): 352-399, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33929656

RESUMO

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.


Assuntos
Lesões Encefálicas , Realidade Virtual , Adulto , Lesões Encefálicas/complicações , Cognição , Função Executiva , Humanos , Testes Neuropsicológicos
6.
Brain Inj ; 36(8): 1033-1038, 2022 07 03.
Artigo em Inglês | MEDLINE | ID: mdl-35971307

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas , Teste da Mesa Inclinada , Adolescente , Sistema Nervoso Autônomo , Pressão Sanguínea/fisiologia , Lesões Encefálicas Traumáticas/complicações , Criança , Frequência Cardíaca/fisiologia , Humanos
7.
Brain Inj ; 35(12-13): 1542-1551, 2021 11 10.
Artigo em Inglês | MEDLINE | ID: mdl-34499583

RESUMO

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.


Assuntos
Movimentos Oculares , Doenças Vestibulares , Adolescente , Protocolos Clínicos , Terapia por Exercício , Humanos
8.
Qual Life Res ; 29(2): 515-528, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31549364

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas/psicologia , Qualidade de Vida/psicologia , Autorrelato , Adolescente , Adulto , Criança , Estudos de Coortes , Pessoas com Deficiência , Função Executiva/fisiologia , Família , Fadiga/psicologia , Feminino , Humanos , Masculino , Pais/psicologia , Estudos Prospectivos , Inquéritos e Questionários , Índices de Gravidade do Trauma , Adulto Jovem
9.
J Head Trauma Rehabil ; 35(2): 104-116, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31246880

RESUMO

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).


Assuntos
Lesões Encefálicas Traumáticas , Fadiga , Adolescente , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/diagnóstico , Lesões Encefálicas Traumáticas/epidemiologia , Criança , Fadiga/epidemiologia , Fadiga/etiologia , Humanos , Escala de Gravidade do Ferimento , Estudos Longitudinais , Pais , Estudos Prospectivos , Qualidade de Vida , Autorrelato , Adulto Jovem
10.
Brain Inj ; 34(11): 1480-1488, 2020 09 18.
Artigo em Inglês | MEDLINE | ID: mdl-32809873

RESUMO

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.


Assuntos
Sistema Nervoso Autônomo , Lesões Encefálicas Traumáticas , Adolescente , Pressão Sanguínea , Lesões Encefálicas Traumáticas/complicações , Sistema Cardiovascular , Movimentos Oculares , Frequência Cardíaca , Humanos , Propriocepção
11.
Brain Inj ; 34(4): 583-590, 2020 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-32050813

RESUMO

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.


Assuntos
Neoplasias Encefálicas , Metacognição , Adolescente , Idoso , Neoplasias Encefálicas/radioterapia , Criança , Função Executiva , Humanos , Memória de Curto Prazo , Testes Neuropsicológicos , Pais , Inquéritos e Questionários
12.
Brain Inj ; 33(8): 1105-1115, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31165657

RESUMO

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.


Assuntos
Concussão Encefálica/diagnóstico , Concussão Encefálica/psicologia , Escolaridade , Idioma , Testes Neuropsicológicos , Fatores Etários , Lesões Encefálicas Traumáticas/diagnóstico , Lesões Encefálicas Traumáticas/psicologia , Criança , Feminino , Seguimentos , Humanos , Lactente , Testes de Linguagem , Masculino , Estudos Retrospectivos
13.
Brain Inj ; 33(9): 1208-1218, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31237456

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/psicologia , Transtornos da Memória/etiologia , Transtornos da Memória/psicologia , Memória , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Avaliação da Deficiência , Avaliação Educacional , Feminino , Escala de Coma de Glasgow , Humanos , Lactente , Testes de Inteligência , Estudos Longitudinais , Masculino , Testes Neuropsicológicos , Estudos Prospectivos , Recuperação de Função Fisiológica , Resultado do Tratamento , Percepção Visual
14.
Neuropsychol Rehabil ; 29(9): 1359-1382, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29283024

RESUMO

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.


Assuntos
Lesões Encefálicas/complicações , Disfunção Cognitiva/diagnóstico , Função Executiva , Memória Episódica , Testes Neuropsicológicos/normas , Pensamento/fisiologia , Adolescente , Criança , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/fisiopatologia , Diagnóstico por Computador/normas , Função Executiva/fisiologia , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Realidade Virtual
15.
J Psychosoc Oncol ; 37(1): 96-109, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30592250

RESUMO

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.


Assuntos
Neoplasias Encefálicas/psicologia , Mães/psicologia , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Neoplasias Encefálicas/terapia , Criança , Pré-Escolar , Feminino , França/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Mães/estatística & dados numéricos , Adulto Jovem
16.
Lancet Oncol ; 19(8): e419-e428, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-30102236

RESUMO

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.


Assuntos
Bancos de Espécimes Biológicos/normas , Biomarcadores Tumorais , Neoplasias do Sistema Nervoso Central , Oncologia/normas , Pesquisa Translacional Biomédica/métodos , Bancos de Espécimes Biológicos/ética , Bancos de Espécimes Biológicos/organização & administração , Criança , Feminino , Humanos , Masculino , Oncologia/organização & administração , Oncologia/tendências , Pesquisa Translacional Biomédica/organização & administração , Pesquisa Translacional Biomédica/normas
17.
Brain Inj ; 32(13-14): 1780-1786, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30296189

RESUMO

OBJECTIVE: Studies on parental stress following childhood acquired brain injury (ABI-including brain tumours (BT) and other brain injuries) are scarce. The aim of this study was to assess maternal stress in a sample of children and adolescents diagnosed with severe paediatric ABI. METHODS: Seventy-eight French-speaking mothers of 37 with BT and 41 with other ABIs completed the Paediatric Inventory for Parents (PIP), the State-Trait Anxiety Inventory (STAI) and the Family Assessment Device (FAD) at a mean time since diagnosis of 1.5 years. RESULTS: The PIP correlated significantly with the STAI and the FAD. Socio-demographic factors, such as the age of mother and child, and the mother's educational level, were correlated with both maternal stress and anxiety. Maternal stress scores were comparable between groups. Emotional functioning was the most markedly affected domain, followed by parental role. CONCLUSIONS: Emotional stress as assessed by the PIP in mothers of children with ABI is significant and should motivate specific psychosocial interventions.


Assuntos
Lesões Encefálicas/epidemiologia , Relações Mãe-Filho/psicologia , Mães/psicologia , Estresse Psicológico/etiologia , Adolescente , Adulto , Lesões Encefálicas/psicologia , Lesões Encefálicas/reabilitação , Criança , Correlação de Dados , Família , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Fatores Socioeconômicos , Estresse Psicológico/epidemiologia , Inquéritos e Questionários
18.
J Head Trauma Rehabil ; 32(6): E1-E12, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28195957

RESUMO

OBJECTIVES: To describe dysexecutive symptoms in children with traumatic brain injury (TBI) using the Behavior Rating Inventory of Executive Function (BRIEF); to compare parent- and teacher-ratings, to analyze the differential impairment in the BRIEF subscales, and factors influencing outcome. PARTICIPANTS: Children aged 5 to 18 years 11 months, referred to a rehabilitation department following TBI. OUTCOME MEASURES: Parent- and teacher reports of the BRIEF. RESULTS: A total of 194 patients participated in the study: mild (n = 13), moderate (n = 12), severe (n = 169); mean 4.92 (standard deviation = 3.94) years post-injury. According to parent ratings (n = 193), all BRIEF subscales and indices were significantly elevated (23.8%-48% in the clinical range). The Working Memory subscale score was significantly higher than all other subscales. Results of teacher ratings (n = 28) indicated similar significantly elevated scores in all subscales (39.3%-57.2% in the clinical range). No significant difference was found between parent and teacher ratings, which were significantly correlated. Regression analyses indicated that, in children with severe TBI, parental BRIEF overall and metacognition indices were significantly predicted by younger age at injury and older age at assessment, whereas no significant predictor of behavioral regulation index was identified. DISCUSSION AND CONCLUSION: This study highlights significant executive dysfunction in everyday life several years after childhood TBI, evident in home and school environments.


Assuntos
Lesões Encefálicas Traumáticas/reabilitação , Função Executiva/fisiologia , Transtornos da Memória/diagnóstico , Monitorização Fisiológica/métodos , Inquéritos e Questionários , Adolescente , Lesões Encefálicas Traumáticas/diagnóstico , Criança , Pré-Escolar , Estudos de Coortes , Bases de Dados Factuais , Feminino , Humanos , Escala de Gravidade do Ferimento , Masculino , Transtornos da Memória/epidemiologia , Testes Neuropsicológicos , Pais , Análise de Regressão , Instituições Acadêmicas
19.
Neuropsychol Rehabil ; 27(5): 618-666, 2017 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-28075219

RESUMO

Executive functions (EF) allow persons to adapt to situations arising in daily life and can be affected following acquired brain injury (ABI). Measuring the impact of EF impairments on the accomplishment of activities of daily living (ADL) requires specific assessment tools, but choosing the right tool may be difficult. PURPOSE: To conduct a scoping review on how assessments of ADL address EF and EF impairments in persons with ABI. METHOD: A scoping review of literature (peer-reviewed and grey literature) published until August 2014 was conducted. Using a systematic procedure, literature was selected, results were charted, and tools were analysed with respect to their goals, underlying models, psychometric properties and applicability. The analysis also included how tools considered components of EF according to Lezak's model. RESULTS: 12 tools, developed either to assess EF in ADL, independence in ADL considering EF or ADL capacities, were identified and analysed according to multiple criteria. CONCLUSIONS: This review provides important information about existing tools to assist in tool selection and clinical decision-making related to ABI and EF.


Assuntos
Atividades Cotidianas/psicologia , Lesões Encefálicas , Transtornos Cognitivos/etiologia , Função Executiva/fisiologia , Lesões Encefálicas/complicações , Lesões Encefálicas/diagnóstico , Lesões Encefálicas/psicologia , Transtornos Cognitivos/diagnóstico , Bases de Dados Bibliográficas/estatística & dados numéricos , Humanos , Testes Neuropsicológicos
20.
Arch Phys Med Rehabil ; 97(1): 157-70, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26343173

RESUMO

Goal Attainment Scaling (GAS) is a method for writing personalized evaluation scales to quantify progress toward defined rehabilitation goals. In the published literature, GAS methodology is used with different levels of rigor, ranging from precisely written GAS scales that ensure minimal bias and explicitly describe 5 levels of goal attainment to subjective ratings of goal attainment by adjectives (eg, worse/better than expected), which are transformed into a T score, wrongly giving the reader the impression of a truly standardized, interval scale. A drawback of GAS methodology is that it is highly dependent on the ability of the GAS setting team/person to generate valid, reliable, and meaningful scales; therefore, reliability and validity of GAS scales are idiosyncratic to each study. The aims of this article were to (1) increase awareness of potential sources of bias in GAS processes; (2) propose GAS quality appraisal criteria, allowing judgment of the quality of GAS methodology in individual rehabilitation studies; and (3) propose directions to improve GAS implementation to increase its reliability and validity as a research measurement tool. Our proposed quality appraisal criteria are based on critical appraisal of GAS literature and published GAS validity studies that have demonstrated that precision, validity, and reliability can be obtained when using GAS as an outcome measure in clinical trials. We recommend that authors using GAS report accurately how GAS methodology was used based on these criteria.


Assuntos
Avaliação de Resultados em Cuidados de Saúde/métodos , Planejamento de Assistência ao Paciente , Reabilitação/normas , Inquéritos e Questionários/normas , Logro , Viés , Pesquisa Biomédica , Objetivos , Humanos , Psicometria , Reprodutibilidade dos Testes
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