Arend J. de Kloet

The incidence of traumatic brain injury in young people in the catchment area of the University Hospital Rotterdam, The Netherlands

BACKGROUND Traumatic brain injury (TBI) is in the developed countries the most common cause of death and disability in childhood. AIM The purpose of this study is to estimate the incidence of TBI for children and young people in an urbanised region of the Netherlands and to describe relevant characteristics of this group. METHODS Patients, aged 1 month - 24 years who presented with traumatic brain injury at the Erasmus University Hospital (including the Sophia Childrens Hospital) in 2007 and 2008 were included in a retrospective study. Data were collected by means of diagnosis codes and search terms for TBI in patient records. The incidence of TBI in the different referral areas of the hospital for standard, specialised and intensive patient care was estimated. RESULTS 472 patients met the inclusion criteria. The severity of the Injury was classified as mild in 342 patients, moderate in 50 patients and severe in 80 patients. The total incidence of traumatic brain injury in the referral area of the Erasmus University Hospital was estimated at 113.9 young people per 100.000. The incidence for mild traumatic brain injury was estimated at 104.4 young people, for moderate 6.1 and for severe 3.4 young people per 100.000. CONCLUSION The ratio for mild, moderate and severe traumatic brain injury in children and young people was 33.7-1.8-1.In the mild TBI group almost 17% of the patients reported sequelae. The finding that 42% of them had a normal brain CT scan at admission underwrites the necessity of careful follow up of children and young people with mild TBI.

Determinants of participation of youth with acquired brain injury: A systematic review

Abstract Objectives: Participation is considerably restricted in children and adolescents with acquired brain injury (ABI) as compared to their healthy peers. This systematic review aims to identify which factors are associated with participation in children and adolescents with ABI. Methods: A systematic search in Medline and various other electronic databases from January 2001–November 2014 was performed. All clinical studies describing determinants of participation at least 1 year after the diagnosis of ABI by means of one or more pre-defined instruments in patients up to 18 years of age were included. Extracted data included study characteristics, patient characteristics, participation outcome and determinants of participation (categorized into: health conditions (including characteristics of ABI), body functions and structures, activities, personal factors and environmental factors). The methodological quality of the studies was evaluated based on three quality aspects (selection, information and statistical analysis bias) and scored as low, moderate or high. Results: Eight studies using an explicit participation outcome measure were selected after review, including a total of 1863 patients, with a follow-up ranging from 1 up to 288 months. Three studies included patients with a traumatic or a non-traumatic brain injury (TBI or NTBI) and five studies with only TBI patients. Factors consistently found to be associated with more participation restrictions were: greater severity of ABI, impaired motor, cognitive, behavioural and/or sensory functioning, limited accessibility of the physical environmentand worse family functioning. Fewer participation problems were associated with a supportive/nurturing parenting style, higher household income, acceptance and support in the community and availability of special programmes. The overall methodological quality of the included studies was high in two and moderate in six studies. Conclusion: This systematic review shows that only a few, moderate quality, studies on the determinants of participation after paediatric ABI using recommended explicit measurement instruments are available. Various components of the ICF model: health condition, body functions and structures and environmental factors were consistently found to be associated with participation. More methodologically sound studies, using the recommended explicit outcome measures, a standardized set of potential determinants and long-term follow-up are suggested to increase the knowledge on participation in children and youth with ABI.

Family impact of acquired brain injury in children and youth

Objective: To assess the parental view on the impact of pediatric traumatic brain injury (TBI) and nontraumatic brain injury (NTBI) on the family and its determinants. Methods: Follow-up study including parents of children with a hospital-based diagnosis of acquired brain injury (ABI) aged 4–20 years at onset of ABI. Parents completed the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM), which measures Parent Health-Related Quality of Life, Family Functioning, Communication, and Worry. Additional assessments included the Pediatric Stroke Outcome Measure (PSOM), the Child & Family Follow-up Survey (CFFS), PedsQL General Core and Multiple Fatigue Scales, and sociodemographic and disease characteristics. Results: Parents of 108 patients, median age 13 years (range 5–22), completed the questionnaires 24–30 months after diagnosis. There were 81 patients with TBI of whom 11 (14%) with moderate/severe TBI and 27 patients with NTBI of whom 5 (19%) with moderate/severe NTBI. The median PedsQL FIM Total Scale was 80.4 (SD 16.1). The PedsQL FIM Total Scale and 4 out of 5 Subscale Scores were statistically significantly better in the TBI group than in the NTBI group and in patients with severe NTBI than with mild/moderate NTBI. Moreover, in the total group, there were significant univariate associations between the FIM Total Scale and/or one or more Subscale Scores and age, preinjury patient health problems, and the PSOM, CFFS, PedsQL General Core, and Multiple Fatigue Scales. In the multivariable analysis, the FIM Total Scale was significantly associated with type and severity of injury and preinjury patient health problems. Conclusions: Two years after onset, the parent-reported that impact of ABI on the family as measured by the PedsQL FIM was considerable especially in patients with moderate/severe NTBI.

Psychometric evaluation of the Dutch language version of the Child and Family Follow-up Survey

Abstract Aim: The Child and Family Follow-up Survey (CFFS) is developed to monitor long-term outcomes of children and youth with acquired brain injury (ABI). The aim of this study was to translate and adapt it into the Dutch language and to evaluate its reliability and validity. Methods: The CFFS includes the Child and Adolescent Scale of Participation (CASP), the Child and Adolescent Factors Inventory (CAFI) and the Child and Adolescent Scale of Environment (CASE). The CFFS was translated into Dutch following international guidelines and adapted. The internal consistency, validity and test–retest reliability were examined among two groups of patients (n = 140 and n = 27) in the age of 5–22 years with ABI and their parents. Results: The translation and adaptation resulted in the CFFS-DLV, Dutch language version. The CASP-DLV, CAFI-DLV and CASE-DLV had a good internal consistency, with Cronbach’s alpha being 0.95, 0.89 and 0.83, respectively. There were statistically significant correlations among the three CFFS subscale scores. These scores were also significantly correlated with the total scores of the Pediatric Quality of Life Inventory (PedsQL, parent) and the Pediatric Stroke Outcome Measure, but not with the domain scores of the Children’s Assessment of Participation and Enjoyment (CAPE). The test–retest reliability was good to moderate, with the intra-class correlation coefficients being 0.90 for the CASP-DLV, 0.95 for the CAFI-DLV and 0.81 for the CASE-DLV. Conclusions: The CFFS-DLV, as translation and adaptation of the CFFS into Dutch, proved to be a promising instrument to measure long-term outcomes of children and youth with ABI. Further research is needed to examine its responsiveness to change and potential in other patient groups.

Neuropsychological Functioning of Children and Youth with AcquiredBrain Injury 2 Years after Onset

Background: Neurocognitive deficits following pediatric acquired brain injury (ABI) often remain under reported, whereas these sequalae impact several domains of activities and participation. Objective: To screen neurocognitive consequences of pediatric ABI in a hospital-based cohort using both a professional and parent reported screening tool. Methods: Follow-up study including children with a hospital-based diagnosis, aged 4-20 years at onset of ABI, using the Processing Speed and Attention subtests of the Amsterdamse Neuropsychological Tasks (ANT) and the parent reported Brain Injury Alert (BIA). Age, type and severity of injury were used in analysis as associated factors. Results: 103 children, aged 4 up to 20 years (median 13y) at onset of ABI, were assessed 2 years later. 89 (86%) on injuries were classified as mild and 80 (78%) had a traumatic cause (TBI). The study cohort responded more accurate (accuracy 29.4-30.4%, >1 SD) and slow (inhibition speed 25.5-38.2%, >1 SD) on the ANT tasks compared to the norm group without neurocognitive deficits. One or more cognitive problems were reported by 62 (65%) of the parents, 1 or more social emotional problems by 66 (69%) and 1 or more cognitive and social emotional problem by 70 (77%). Type (NTBI) and severity (moderate/severe) of injury were associated with worse neurocognitive outcome in both professional (ANT) and parent reported (BIA) outcome, whereas age (younger age group) was only associated with parent (BIA) outcome. Conclusion: Neurocognitive problems were found in this hospital-based cohort of children with ABI, especially in the older age and NTBI group, with parents reporting strikingly more problems than professionals.

What is Important in E-health Interventions for Stroke Rehabilitation? A Survey Study among Patients, Informal Caregivers, and Health Professionals.

Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals. Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.

Neurological outcome in children and youth with acquired brain injury 2-year post-injury

ABSTRACT Objective: To determine neurological outcome in children and youth with acquired brain injury (ABI) and explore associated factors. Design: Cross-sectional study, two-years post-injury. Patients: Hospital-based sample (n=112) aged 6-22 years. Methods: Neurological outcome and participation were assessed with a multidimensional neurological examination and the Child and Adolescent Scale of Participation. Logistic regression analyses were used to explore the relationships. Results: Both sensorimotor and cognitive deficits were found in 30-31%, language deficits and behavioural deficits in 10-17%. Non-traumatic injury had a negative impact on neurological outcome, specifically regarding sensorimotor and language deficits. Lower education level showed a significantly poorer neurological outcome. High levels of age-expected participation were reported, with a significant relation between deficits and participation restrictions, especially at school. Conclusion: One out of three have a poor neurological outcome, related to type of injury and lower level of education. The amount of deficits is associated with participation restrictions.

Searching for effective components of cognitive rehabilitation for children and adolescents with acquired brain injury: A systematic review

ABSTRACT Aim. Cognitive rehabilitation is of interest after paediatric acquired brain injury (ABI). The present systematic review examined studies investigating cognitive rehabilitation interventions for children with ABI, while focusing on identifying effective components. Components were categorized as (1) metacognition and/or strategy use, (2) (computerized) drill-based exercises, and (3) external aids. Methods. The databases PubMed (including MEDLINE), PsycInfo, and CINAHL were searched until 22nd June 2017. Additionally, studies were identified through cross-referencing and by consulting experts in the field. Results. A total of 20 articles describing 19 studies were included. Metacognition/strategy use trainings (five studies) mainly improved psychosocial functioning. Drill-based interventions (six studies) improved performance on tasks similar to training tasks. Interventions combining these two components (six studies) benefited cognitive and psychosocial functioning. External aids (two studies) improved everyday memory. No studies combined external aids with drill-based interventions or all three components. Conclusion. Available evidence suggests that multi-component rehabilitation, e.g. combining metacognition/strategy use and drill-based training is most promising, as it can lead to improvements in both cognitive and psychosocial functioning of children with ABI. Intervention setting and duration may play a role. Conclusions remain tentative due to small sample sizes of included studies heterogeneity regarding outcome measures, intervention and therapist variables, and patient characteristics.

Gamen in revalidatie voor mensen met niet-aangeboren hersenletsel

SamenvattingMensen die als gevolg van niet-aangeboren hersenletsel (NAH) door een ongeval, een beroerte (cerebrovasculair accident (CVA), hersenbloeding of herseninfarct) of een andere hersenaandoening, een onomkeerbare breuk in hun functioneren en een verminderde participatie en kwaliteit van leven ervaren, moeten eerder geleerde en beheerste vaardigheden opnieuw of anders leren. Recente onderzoeken laten zien dat gamen veelbelovend lijkt, naast en na een reguliere behandeling. Motivatie, succeservaringen en plezier gaan hierbij hand in hand. Patiënten vinden de games aantrekkelijk om te spelen en afwisselend. Daarbij geven de games het gevoel dat je jezelf traint en dat dit ook werkelijk helpt. Professionals (revalidatieartsen, verpleegkundigen, fysiotherapeuten, ergotherapeuten, logopedisten, bewegingsagogen, psychologen en maatschappelijk werkers) geven eveneens aan dat zij behoefte hebben aan behandelprogramma’s die inspirerend zijn en de therapietrouw vergroten, die efficiënt en effectief zijn en die thuis gedaan kunnen worden. Door het overweldigende en snel groeiende aanbod van e-healthtoepassingen is het maken van een onderbouwde en passende keuze door de professional echter nauwelijks mogelijk. Het lectoraat Revalidatie van Sophia Revalidatie en De Haagse Hogeschool hebben daarom de afgelopen jaren onderzoek gedaan naar toepassingsmogelijkheden van onder andere gamen. In dit artikel worden de belangrijkste ervaringen met motorisch en cognitief gamen beschreven.