BENDI: Improving Cognitive Assessments in Toddlers and Children with Down Syndrome Using Stealth Assessment.

Cognitive assessment is a fundamental step in diagnosing intellectual and developmental disabilities, designing interventions, and evaluating their impact. However, developed and developing countries have different access to tools designed for these purposes. Our goal was to develop a battery for cognitive assessment mediated by digital technology that allows the exploration of cognitive domains (inhibitory control, attention, motor ability, and context memory) in children with Down Syndrome (DS) in Chile. Four tasks, based on established experimental paradigms modified to provide a game-like experience, were tested in 68 children with DS from 20 months to 12 years of age. We present evidence of reliability based on internal consistency and split-half analyses, with results ranging from adequate to excellent. Regarding validity, factorial and correlational analyses show evidence consistent with what was theoretically expected of internal structure, convergence, and divergence with other measures. Expected age trajectories were observed as well. Our data offer evidence that supports the use of tasks based on touch-screen devices for cognitive assessment in the population with DS. The tasks also have a low cultural load, so they could be validated and used in other contexts without the need for an adaptation process.

Study of a set of reading precursors among Chilean children with Down syndrome.

Learning to read for children with Down syndrome is relevant because of the impact this ability has on learning and the development of autonomy. Previous research has described reading development in this population, but it is not clear if the process and precursors are the same in a transparent language like Spanish. This study explores performance in a set of precursors (phonological awareness, visual recognition, vocabulary, letter knowledge and verbal reasoning) in 42 children with Down syndrome between 6:0 and 10:11 years. We hypothesized that the participants would have a lower performance than previously reported with children with typical development, particularly in tasks of phonological awareness, because the method for reading instruction in Chile with this population is usually the global method. Our results show that the precursors improve with age, that there are differences in performance between the skills assessed, and the ceiling effect was not observed as would be expected for children with typical development for the abilities assessed at these ages, which suggests that in the children assessed the precursors are not consolidated at these ages. These results suggest that the stimulation of phonological awareness and other reading precursors in children with Down syndrome is important for reading development.

Standardization and diagnostic utility of the Frontal Assessment Battery for healthy people and patients with dementia in the Chilean population.

The Frontal Assessment Battery (FAB) is a screening test that measures executive functions. Although this instrument has been validated in several countries, its diagnostic utility in a Chilean population has not been studied yet. Objectives: This study aimed to (1) adapt FAB in a Chilean population; (2) study the psychometric properties of the FAB in a Chilean population; (3) assess the sociodemographic influence in the performance of the FAB in a sample of healthy controls (HC); and (4) develop normative data for this healthy group. Methods: A HC (n=344) and a group of patients with dementia (n=156) were assessed with the Chilean version of FAB. Results: FAB showed good internal consistency (Cronbach's alpha=0.79) and acceptable validity based on the relationship with other variables. Factor analysis showed the unidimensionality of the instrument. Significant differences were found in the total FAB value between the HC and dementia groups. With the matched sample, the established cutoff point was 13.5, showing a sensitivity of 80.8% and a specificity of 90.4%. Regression analysis showed that education and age significantly predicted FAB performance in the healthy group. Finally, normative data are provided. Conclusions: This study shows that FAB is a useful tool to discriminate between healthy people and people with dementia. However, further studies are needed to explore the capacity of the instrument to characterize the dysexecutive syndrome in people with dementia in the Chilean population.

A Bateria de Avaliação Frontal (FAB) é um teste de rastreio que mede as funções executivas. Embora esse instrumento tenha sido validado em vários países, sua utilidade diagnóstica em uma população chilena ainda não foi estudada. Objetivos: (1) Adaptar a FAB para uma população chilena; (2) estudar as propriedades psicométricas da FAB em uma população chilena; (3) avaliar a influência sociodemográfica no desempenho da FAB em uma amostra de controles saudáveis; e (4) desenvolver dados normativos para este último grupo. Métodos: Um grupo controle saudável (n=344) e um grupo de pacientes com demência (n=156) foram avaliados com a versão chilena da FAB. Resultados: A FAB apresentou boa consistência interna (alfa de Cronbach=0,79) e validade aceitável com base na relação com outras variáveis. A análise fatorial mostrou a unidimensionalidade do instrumento. Diferenças significativas foram encontradas no valor total da FAB entre os grupos controle saudável e demência. Com a amostra pareada, o ponto de corte estabelecido foi de 13,5, que apresentou sensibilidade de 80,8% e especificidade de 90,4%. A análise de regressão mostrou que a escolaridade e a idade predisseram significativamente o desempenho da FAB no grupo saudável. Finalmente, os dados normativos são fornecidos. Conclusões: O presente estudo mostrou que a FAB é uma ferramenta útil para discriminar entre pessoas saudáveis e aquelas com demência. No entanto, mais estudos são necessários para explorar a capacidade do instrumento para caracterizar a síndrome disexecutiva em pessoas com demência na população chilena.

PaísDI: Feasibility and effectiveness of an advocacy program for adults with intellectual disability and their stakeholders' groups in Chile.

BACKGROUND: People with intellectual disability in Chile face individual and collective barriers to social participation. Lack of knowledge about their rights and tools for effective self-advocacy seem to be key elements that need to be improved to facilitate participation. METHOD: We present PaísDI, a 16 h long manualised program created by self-advocates in collaboration with an interdisciplinary team, with four modules: rights and intellectual disability, leadership in intellectual disability, effective communication and financial considerations of social projects. This quasi-experimental study had 349 participants, divided in three groups: people with intellectual disability, relatives and professionals. Feasibility and effectiveness where measured. RESULTS: The program is shown to be viable and effective, especially in its impact on self-perception for self-advocacy activities. CONCLUSION: The discussion highlights Chile's historic debt in creating policies that promote self-determination, knowledge and the empowerment of people with intellectual disability, to bolster their participation as citizens.

Factors leading to effective social participation promotion interventions for people with intellectual disability: a protocol for a systematic review.

BACKGROUND: People with intellectual disabilities have been historically excluded from decision-making processes. Previous literature indicates that increasing social participation may be an effective way to address this exclusion, but no systematic review of interventions designed to increase social participation of people with intellectual disabilities have been conducted. This study aims to identify and organize the factors associated with interventions that increase the social participation of people with intellectual disabilities and to provide a set of best of practices for future interventions. METHODS/DESIGN: The databases Web of Science, Scopus, LILACS, and PubMed will be searched for articles from January 2004 onwards; grey literature search will be identified through searching additional databases (such as Google Scholar and EBSCO databases). Randomized controlled trials, nonrandomized controlled trials, and controlled pre-post studies will be included. Noncontrolled pre-post studies will also be included. Observational or qualitative studies will be excluded. The primary outcomes are measures of social participation. Secondary outcomes include measures of well-being, stigma, knowledge about rights, and advocacy processes. Two reviewers will independently screen articles, extract relevant data, and assess the quality of the studies. We will provide a meta-analysis of included studies if possible, or a quantitative narrative synthesis otherwise. DISCUSSION: This systematic review will add to our understanding of effective social participation interventions for people with intellectual disability. It will allow us to identify and organize which factors lead to an increase in social participation and help us define a set of best practices to be followed by future interventions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020189093.

The impact of the COVID-19 pandemic on the health, wellbeing, and access to services of people with intellectual and developmental disabilities.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) may be especially vulnerable to changes associated with the COVID-19 pandemic given an increased likelihood of health concerns, low socioeconomic status, and difficulty accessing services. AIMS: The purpose of this study was to explore mental health problems and services in individuals with IDD during the pandemic. We explored whether number of mental health problems differed by disability, age, gender, living situation, physical health, and access to services. METHODS AND PROCEDURES: An online survey about experiences during the pandemic was administered to adults with IDD and their caregivers in the United States and in Chile. OUTCOMES AND RESULTS: In both Chile and the United States, few people endorsed increased health problems. Half of the sample in Chile and 41 % of the sample in the United States endorsed increased mental health problems. Approximately 15 % of the sample in the US reported no longer receiving state developmental disability services. CONCLUSIONS AND IMPLICATIONS: Healthcare and disability-specific agencies should consider strategies to tailor supports to improve mental health functioning and access to community.

Different abilities needed at home and school: The relation between executive function and adaptive behaviour in adolescents with Down syndrome.

Studies have shown that executive function abilities are related and have predictive power over adaptive behaviour in both typical and atypical populations. This study examined the relationship between executive functioning and adaptive behaviour in adolescents with Down syndrome, as it has not been studied before in this population. We propose and test a model of how each core EF (i.e., working memory, inhibition, and flexibility) contributes to each domain of AB (i.e., conceptual, social, and practical). We found that parent reported Conceptual skills were related to working memory, while teacher reported Conceptual and Practical skills were related to inhibition and flexibility. We hypothesise that these findings are related to the different requirements and expectations of the home and school environments: the more predictable home environment requires the adolescent to rely on working memory for his everyday activities, while the changing and challenging school environment requires the inhibition common behaviours and to flexibly change actions to be successful.

Adaptive Behavior and Intelligence in Adolescents With Down Syndrome: An Exploratory Investigation.

Down syndrome (DS) is characterized by difficulties in both intellectual functioning and adaptive behavior. These sets of abilities are considered as separate but related domains with small to moderate correlations. The main objective of this study was to explore the relationship of intellectual functioning and adaptive behavior in adolescents with DS because previous studies have shown different relationship patterns between these constructs across other syndromes. Fifty-three adolescents with DS were assessed regarding their intellectual functioning whereas adaptive behavior was reported by parents and teachers. Participants showed a better performance on verbal than nonverbal tasks when assessing intellectual functioning, contrary to previous findings. Regarding adaptive behavior, higher social skills were reported than conceptual and practical skills. Intellectual functioning and adaptive behavior showed a medium correlation, consistent with observations in typical population. These results support the exploration of the variability across the DS phenotype.

Cognitive performance among cohorts of children exposed to a waste disposal site containing heavy metals in Chile.

Between 1984 and 1998, people living in Arica were involuntarily exposed to metal-containing waste stored in the urban area. The study aims to determine whether children who lived near the waste disposal site during early childhood experienced negative effects on their cognitive development. The cognitive performance was assessed using the Wechsler Intelligence Scale for Children. The exposure variable was defined by the year of birth in three categories: (1) Pre-remediation (born before 1999); (2) During-remediation (born between 1999 and 2003); and (3) Post-remediation (born after 2003). In the crude analysis, a difference of 10 points in the IQ average was observed between the group born in the pre- (81.9 points) and post-remediation period (91.1 points). The difference between both groups was five times higher as compared to children of similar age and socioeconomic status in other cities of Chile. This result could be related with a period of high potential for exposure to this contaminated site.

ω-3 Long-Chain Polyunsaturated Fatty Acids and Fatty Acid Desaturase Activity Ratios as Eventual Endophenotypes for ADHD.

OBJECTIVE: Epidemiological studies suggest that long-chain polyunsaturated fatty acids (LC-PUFAs) may be suitable as endophenotypes for ADHD. To be appropriated vulnerability traits, endophenotypes should be altered in unaffected relatives of index cases. Serum profiles of LC-PUFAs in unaffected relatives of ADHD patients remain understudied. The main objective of this study was to compare serum LC-PUFAs in ADHD patients, unaffected relatives of index cases, and general-population unaffected participants. METHOD: LC-PUFA profiles of 72 participants (27 ADHD patients, 27 unaffected relatives, and 18 general-population participants) were obtained by gas chromatography-mass spectrometry (GC-MS). Groups were compared by parametrical statistics. RESULTS: Unaffected females from the general population presented lower Docosapentaenoic acid (DPA; p = .0012) and a-linolenic acid (ALA; p = .0091) levels compared with ADHD females and unaffected relatives. In addition, docosahexaenoic acid (DHA)/ALA and DHA/DPA ratios, addressing desaturase activity, were significantly lower in ADHD patients and unaffected relatives of ADHD patients in the female-subgroup (p = .022 and .04, respectively). CONCLUSION: DHA/ALA, DHA/DPA, serum DPA, and serum ALA may be suitable as endophenotypes for ADHD women.

Habilidades cognitivas, contexto rural y urbano: comparación de perfiles WAIS-IV en jóvenes / Cognitive skills, rural and urban context: comparison of WAIS-IV profiles in youth

La reciente estandarización en Chile de la Escala Wechsler de Inteligencia para Adultos (WAIS), en su cuarta versión, obliga a investigar el impacto que condiciones culturales y ambientales pueden tener sobre el rendimiento intelectual de las personas. El presente estudio comparó el desempeño de jóvenes provenientes de sectores rurales y urbanos de la región del Biobío, segmentados según nivel educativo de los padres como variable de aproximación al nivel socioeconómico. Los resultados muestran un efecto de interacción entre el nivel socioeconómico y el lugar de residencia. Comprensión verbal y memoria de trabajo son los constructos que reciben un mayor impacto del nivel socioeconómico. Se espera que futuros estudios contribuyan a la investigación de habilidades cognitivas en sectores rurales y socialmente deprivados de Chile.

The recent standardization of Wechsler Adult Intelligence Scale (WAIS) in its fourth version in Chile forces to test the impact that cultural and environmental conditions can have on people's intellectual performance. The present study compared the performance of young people from rural and urban areas of the Biobío region, segmented by parental education level as proxy variable to socioeconomic status. Results showed an interaction effect between socioeconomic status and place of residence. Verbal Comprehension and Working Memory are the constructs that received a higher impact of the socioeconomic status. Future studies are expected to contribute to research on cognitive abilities in rural and socially deprived sectors in Chile.

El juego como vehículo para mejorar las habilidades de lectura en niños con dificultad lectora / Play as a Vehicle for Enhancing Reading Skills in Children with Poor Reading Ability / O jogo como veículo para melhorar habilidades de leitura de crianças com dificuldade leitora

Objetivo. A partir de las escasas propuestas de intervención de la lectura en población infantil colombiana, el presente estudio tiene por objetivo evaluar el impacto de un programa de intervención de la lectura, centrado en juego y aprendizaje implícito, sobre el desempeño lector en niños con dificultades lectoras, inmediatamente después y seis meses posteriores a la aplicación del programa. Método. Por medio de un diseño cuasi - experimental, transversal y comparativo, se evaluaron 20 niños, entre los 7 y 9 años de edad, con un desarrollo psicológico típico, quienes asistían regularmente a un colegio público de la ciudad de Cali (Colombia). Las evaluaciones pre y post incluyeron la aplicación de pruebas que exploran conciencia fonológica, capacidad lectora y rendimiento cognitivo general. Estos datos se emplearon para calcular diferencias entre los desempeños de los niños, obtenidos en la preintervención, posintervención inmediata y a largo plazo. Resultados. Los datos recogidos demostraron que los niños mejoran significativamente su rendimiento lector inmediatamente después de la aplicación del programa, con un efecto que se mantiene a largo plazo. Conclusión. Las dificultades lectoras que presentan los niños participantes pueden mejorarse con la aplicación de un programa de intervención de la lectura, centrado en el juego y aprendizaje implícito.

Objective. Colombian scientific literature on reading acquisition and rehabilitation of reading difficulties is limited. For this reason, this study aims to prove the impact of an intervention program for reading, based on play and implicit learning, in children with non-specific reading disabilities, after finishing the program and 6 months later. Method. Using a cross - sectional and comparative design, 20 children, between 7 to 9 years old, with typical psychological development with regular attendance at a school in Cali (Colombia), participated voluntary in this study. Pre and post - assessment included the evaluation of phonological awareness, reading skills and general cognitive functioning, that were used to establish if there were differences between the three times of assessment. Results. Children showed significant improvement in their reading skills after their participation in the intervention program, maintaining the effect in the long term. Conclusion. Non - specific reading difficulties can be improved with an intervention program of reading, based on play and implicit learning.

Escopo. A partir das escassas propostas de intervençÃo da leitura em populaçÃo infantil colombiana, o presente estudo tem por escopo avaliar o impacto de um programa de intervençÃo da leitura, centrado no jogo e aprendizagem implícita, sobre o desenvolvimento leitor de crianças com dificuldades leitoras, imediatamente depois e seis meses após à aplicaçÃo do programa. Metodologia. Usando uma pesquisa comparativa quasi -experimental, transversal, foram avaliadas 20 crianças, entre os 7 e 9 anos de idades, com um desenvolvimento psicológico típico, que assistem regularmente a uma escola pública da cidade de Cali (Colômbia). As avaliações pre e post incluíram a aplicaçÃo de provas que exploram consciência fonológica, capacidade leitora e rendimento cognitivo geral. Esses dados foram utilizados para calcular as diferenças entre o desempenho das crianças obtido na pré - intervençÃo, imediatamente após a intervençÃo, e longo prazo. Resultados. Esta análise demostrou que as crianças melhoraram significativamente seu rendimento leitor imediatamente depois da aplicaçÃo do programa, com um efeito que se mantem ao longo prazo. ConclusÃo. As dificuldades leitoras que apresentam as crianças podem ser melhoradas com a aplicaçÃo de um programa de intervençÃo da leitura centrado no jogo e aprendizagem implícito.

What standardized tests ignore when assessing individuals with neurodevelopmental disorders.

In this article we critique the use of traditional standardized tests for the cognitive assessment of children with neurodevelopmental disorders. Limitations stem from the lack of integrating (a) results from research into the psychological functioning of these populations, and (b) the main arguments underlying models of human development. We identify four secondary issues in this discussion: (1) these instruments cannot be used with children who have particularly low cognitive functioning; (2) little or no variance in the scores obtained by individuals with neurodevelopmental disorders, because all are at floor, prevent adequate interpretations; (3) measurements do not provide information useful for the design of intervention strategies; and (4) different cognitive and/or neural processes may underlie behavioural scores 'in the normal range'. Rethinking traditional assessment methods in favour of technologically-mediated games yields new cognitive assessment possibilities.

ADHD children outperform normal children in an artificial grammar Implicit learning task: ERP and RT evidence.

This study focuses on Implicit learning (IL) in children. One of the main debates in this field concerns the occurrence of IL indicators in experimental settings and its manifestation in different populations. In this research, we are looking for evidence of the occurrence of IL in normal children and in children with Attention Deficit Hyperactive Disorder (ADHD), based on the relationship between accuracy, reaction time and event-related potentials (ERPs). Our results show differences between the analyzed groups with respect to markers for electrophysiological activity and reaction time, but not for accuracy. In consequence, we suggest that research in IL should explore different indicators and their relationship with the cognitive processing levels involved. In addition, IL might involve different forms of information processing in normal children and children with ADHD. We discuss the possible impact of these findings for future research.