Assessment Tools for Executive Function and Adaptive Function Following Brain Pathology Among Children in Developing Country Contexts: a Scoping Review of Current Tools

Several tools have been developed to assess executive function (EFs) and adaptive functioning, although in mainly Western populations. Information on tools for low-and-middle-income country children is scanty. A scoping review of such instruments was therefore undertaken.We followed the Preferred Reporting Items for Systematic Review and Meta-Analysis- Scoping Review extension (PRISMA-ScR) checklist (Tricco et al., in Annals of Internal Medicine 169(7), 467–473, 2018). A search was made for primary research papers of all study designs that focused on development or adaptation of EF or adaptive function tools in low-and-middle-income countries, published between 1st January 1894 to 15th September 2020. 14 bibliographic databases were searched, including several non-English databases and the data were independently charted by at least 2 reviewers.The search strategy identified 5675 eligible abstracts, which was pruned down to 570 full text articles. These full-text articles were then manually screened for eligibility with 51 being eligible. 41 unique tools coming in 49 versions were reviewed. Of these, the Behaviour Rating Inventory of Executive Functioning (BRIEF- multiple versions), Wisconsin Card Sorting Test (WCST), Go/No-go and the Rey-Osterrieth complex figure (ROCF) had the most validations undertaken for EF tests. For adaptive functions, the tools with the most validation studies were the Vineland Adaptive Behaviour Scales (VABS- multiple versions) and the Child Function Impairment Rating Scale (CFIRS- first edition).There is a fair assortment of tests available that have either been developed or adapted for use among children in developing countries but with limited range of validation studies. However, their psychometric adequacy for this population was beyond the scope of this paper.

The Surplus Effect in Adaptive Behaviour in Down Syndrome: What Can Promote It?

Background: In Down syndrome (DS), adaptive behaviour often shows a “surplus effect” (i.e., higher adaptive abilities than expected from cognitive skills). As inclusive schooling has become mandatory in Italy, we studied the impact of school inclusion on the surplus effect of adaptive behaviour in adult DS, considering potential confounding factors such as parental education. Methods: All consecutive DS individuals from three different sites were queried prospectively regarding type of schooling (inclusive and non-inclusive). Demographic data were documented; cognitive abilities and adaptive behaviour were assessed (Coloured Progressive Matrices and Vineland Adaptive Behaviour Scales). The aim was to establish the presence of a surplus effect in adaptive behaviour, primarily in the overall level and secondarily in the main domains and subdomains. A multivariable-adjusted logistic regression model was used for the association of schooling, and parental education. Results: The majority (65%) showed a surplus effect in adaptive behaviour and had attended inclusive schools (85%). Higher adaptive skills as well as early and longer functional treatment programmes were more readily available for younger individuals. In the group of inclusive schooling, the surplus effect on overall adaptive behaviour was present in 70% as opposed to 38% in the group without inclusive schooling, significant when adjusted for gender and maternal education. This was also observed in socialisation, written, and community, and after adjustment in playing and leisure time. Conclusions: Adaptive behaviour showed a surplus effect in the majority of DS adults, even more so after inclusive schooling. Younger adults showed higher adaptive skills. Moreover, female gender and higher maternal educational level significantly enhanced this surplus effect.

Behavioural Concerns of Children on the Autism Spectrum and the Impact on Parental Quality of Life

PurposeThis study aimed to determine the association between parental quality of life (QoL) and autism severity, child’s cognitive level, adaptive behaviour and behavioural profile, and sociodemographic factors utilising the Quality of Life in Autism Questionnaire (QoLA).MethodsParents of children attending an autism specific preschool centre completed a sociodemographic questionnaire, the Quality of Life in Autism Questionnaire (QoLA), Vineland Adaptive Behaviour Scales 2nd edition (VABS) and Child Behaviour Checklist (CBCL). Trained researchers assessed autism severity with the Autism Diagnostic Observation Schedule-2 (ADOS-2) and the cognitive level with the Mullen Scales of Early Learning (MSEL).ResultsFor parents of children on the autism spectrum, having other children without the condition buffered the potential negative effects on parental QoL. Lower levels of autism severity and internalising behaviours, and higher levels of daily living scores predicted greater perceived parental QoL. Parents perceived their child’s autism-specific behaviour as less problematic when the child had higher socialisation scores. While lower levels of Attention Problems, Withdrawn Behaviour and lower scores on the Dysregulation Profile (Externalising Behaviours, Aggressive Behaviour and Anxious/Depressed) predicted greater perceived parental QoL, higher levels of Withdrawn Behaviour, Aggression and Externalising Behaviour predicted poorer perceived parental QoL. There were no significant findings for the relationship between parental QoL and cognitive level.ConclusionThe present research establishes the complex effects of raising a child on the autism spectrum on parental QoL. Findings indicate a child’s autism symptom severity, adaptive functioning and behavioural profile has greater impact on parental QoL than cognitive level.

Correlates of adaptive skills in children with autism spectrum disorder

This study aimed to identify potential modifiable factors prior to early intervention that are associated with better adaptive skills in children with autism spectrum disorder. This cross-sectional study recruited patients with autism spectrum disorder, aged 5–12 years from two tertiary developmental programmes in Singapore. Demographics, family socio-economic status and early intervention details were collected. The primary outcome was the Vineland Adaptive Behaviour Scales Adaptive Behaviour Composite score. Multivariate linear regression analysis was done. The sample ( N = 193) comprised 84% males with a mean age of 6 years and 7 months. Mean age at diagnosis was 35.5 months and mean Vineland Adaptive Behaviour Scales Adaptive Behaviour Composite standard score was 76.5. Mean waiting time for early intervention was 6.2 months with a mean intensity of 8.0 h/week. Waiting time for early intervention was a negative correlate of the Vineland Adaptive Behaviour Scales Adaptive Behaviour Composite score after controlling for other variables ( β = −0.74, p = 0.04). Significant correlates also included paternal education ( β = 5.44, p = 0.03) and the presence of financial difficulties in the family ( β = −5.98, p = 0.04). Waiting time for early intervention is a modifiable risk factor that may be addressed during service planning to potentially improve adaptive skills in autism spectrum disorder. Children from low socio-economic status families may be at risk for poor functional skills and will benefit from targeted intervention plans. Lay abstract Despite improving services and care for individuals with autism spectrum disorder, functional outcomes such as daily living skills tend to be suboptimal for many. This study wanted to identify modifiable early intervention factors that are associated with better outcomes and possible high-risk groups of children who are at risk of poorer outcomes. Participants included 193 children aged between 5 and 12 years of age whose parents provided information on their family background and early intervention characteristics. These children also had their adaptive behaviour skills examined by formal testing. Results indicated that shorter wait time for early intervention was associated with better adaptive behaviour scores. Children from families with financial difficulties and lower paternal education were also at risk of poorer adaptive skills. Designing services for children with autism such that wait times to enter early intervention services are minimised following initial diagnosis can improve their eventual functional outcomes. Changes in healthcare policy to allow expedited entry or targeted intervention to children from low socio-economic status families can also enhance their eventual adaptive skill gains.

The Developmental Pathways of Preschool Children with Acute Lymphoblastic Leukemia: Communicative and Social Sequelae One Year after Treatment

Early childhood is considered to be a period of rapid development, with the acquisition of abilities predicting future positive school competences. Motor, cognitive and social difficulties related to cancer therapies heavily impact the development of children with cancer. This study focused on two main aims: to assess the developmental pathways of preschool children with acute lymphoblastic leukaemia one year post-treatment and to compare these abilities both with those of a control group of healthy peers and with Italian norms. Forty-four children and their families, recruited through the Haematology-Oncologic Clinic of the Department of Child and Woman Health (University of Padua), agreed to participate to this study. The children’s mean age was 4.52 years (SD = 0.94, range = 2.5-6 years), equally distributed by gender, all diagnosed with Acute Lymphoblastic Leukaemia. Matched healthy peers were recruited through paediatricians’ ambulatories. Each family was interviewed adopting the Vineland Adaptive Behaviour Scales. Paired sample Wilcoxon tests revealed that children were reported to have significantly more developmental difficulties than their healthy peers. When compared with Italian norms they scored particularly low in verbal competence, social and coping skills. No significant association were found between treatment variables and developmental abilities. These findings suggest that the creation of specialized interventions both for parents and children may fill the possible delays in children’s development probably due to stress, lack of adequate stimulation or difficult adaptation.

The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis

‘High functioning autism’ is a term often used for individuals with autism spectrum disorder without an intellectual disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-term outcomes, despite contradictory clinical observations. This study investigated the relationship between adaptive behaviour, cognitive estimates (intelligence quotient) and age at diagnosis in autism spectrum disorder. Participants ( n = 2225, 1–18 years of age) were notified at diagnosis to a prospective register and grouped by presence ( n = 1041) or absence ( n = 1184) of intellectual disability. Functional abilities were reported using the Vineland Adaptive Behaviour Scales. Regression models suggested that intelligence quotient was a weak predictor of Vineland Adaptive Behaviour Scales after controlling for sex. Whereas the intellectual disability group’s adaptive behaviour estimates were close to reported intelligence quotients, Vineland Adaptive Behaviour Scales scores fell significantly below intelligence quotients for children without intellectual disability. The gap between intelligence quotient and Vineland Adaptive Behaviour Scales scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.

Comparison of Adaptive Behaviour among Children with Learning Difficulties

The objective of this study is to explore the nature of adaptive behaviour in terms of fine and gross motor skills in children with learning difficulties. This research aims to find whether there are any differences between the fine and gross motor skills among the children from the age of four to fourteen with learning difficulties. This study used Vineland Adaptive Behaviour Scales Classroom Edition survey questionnaire to explore the differences in the adaptive behaviour of children with learning difficulties in the motor skills domain. A quantitative within-participants experimental design was employed to assess the adaptive behaviour among children with learning difficulties in motor skill domain. The independent variable was the motor skills consisting of two levels which are the fine motor skills and gross motor skills. The dependent variable was the difference in adaptive behaviour of the children with learning difficulties. Paired-samples t-test was used to study the differences between the variables. It was evident that the paired sample t-test conducted implied that there was no significant difference between the variables which are the fine and gross motor skills. Future researchers could also compare other demographic factors such as age, gender or cultural background that influences the adaptive behaviour of children with learning difficulties in various domains besides motor skills such as socialisation and communication domains.

Parental stress and support of parents of children with spina bifida in Uganda

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.Keywords: Parents; Stress; Spina Bifida; Disability; Africa