Quality of Life in Hungarian Parents of Autistic Individuals.

PURPOSE: Parents of autistic individuals have been known to have a lower overall quality of life (QQL) than those of typically developing children. We present the first Hungarian large-sample study whose objective was to explore the differences in QOL between parents of autistic individuals (AS) and those of neurotypical (NT) persons. METHODS: Based on the ABCX model we developed a questionnaire comprising standardized scales to characterize the life of parents involved. Our data came from parents of 842 individuals (ASD = 521, NT = 321) between 0 and 49 years. Battery deployed standardized instruments to examine quality of life (WHO-QQL BREF and Quality of Life in Autism questionnaire, QOLA). We assessed the families' socio-economic/demographic characteristics, parents' psychological well-being, the autistic/neurotypical individuals' characteristics, and the interventions. RESULTS: Our data showed significantly lower QOL in parents of autistic individuals in all domains of questionnaires. We analyzed 20 relevant factors to uncover the predictors of parental QOL. We confirmed the existence of most but not all predictors present in earlier literature and identified intervention-related predictors. CONCLUSION: Our study confirms the importance of supporting parents in their role, and of providing health and social supports that focus on quality of life, in addition to child care.

Development of an Adaptive Computer-Aided Soft Sensor Diagnosis System for Assessment of Executive Functions.

The main objective of the present study is to highlight the role of technological (soft sensor) methodologies in the assessment of the neurocognitive dysfunctions specific to neurodevelopmental disorders (for example, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), and specific learning disorder). In many cases neurocognitive dysfunctions can be detected in neurodevelopmental disorders, some of them having a well-defined syndrome-specific clinical pattern. A number of evidence-based neuropsychological batteries are available for identifying these domain-specific functions. Atypical patterns of cognitive functions such as executive functions are present in almost all developmental disorders. In this paper, we present a novel adaptation of the Tower of London Test, a widely used neuropsychological test for assessing executive functions (in particular planning and problem-solving). Our version, the Tower of London Adaptive Test, is based on computer adaptive test theory (CAT). Adaptive testing using novel algorithms and parameterized task banks allows the immediate evaluation of the participant's response which in turn determines the next task's difficulty level. In this manner, the subsequent item is adjusted to the participant's estimated capability. The adaptive procedure enhances the original test's diagnostic power and sensitivity. By measuring the targeted cognitive capacity and its limitations more precisely, it leads to more accurate diagnoses. In some developmental disorders (e.g., ADHD, ASD) it could be very useful in improving the diagnosis, planning the right interventions, and choosing the most suitable assistive digital technological service.

Development and norming of the Hungarian CDI-III: A screening tool for language delay.

BACKGROUND: Difficulties in language development are related to social and emotional problems, lower academic outcomes, and lower quality of life from childhood to adolescence. These grave consequences might be significantly reduced by timely identification and professional support. The introduction of systematic screening for language delay (LD) in 3-year-old children in Hungary was based on the recent adaptation of the MacArthur-Bates CDI-III (HCDI-III). AIMS: To explore the relevant psychometric properties of the HCDI-III; to identify factors characteristic of the families and children influencing language development at the age group under investigation; and to evaluate the adequacy of the tool for the purpose of screening LD in kindergarten at the age of 3 years. METHODS & PROCEDURES: The norming study of the HCDI-III was conducted in a collaborative research project with the Metropolitan Pedagogical Services in Budapest. HCDI-III parent report forms along with a demographic survey form were distributed to parents of all Hungarian-speaking children between the ages of 2;0 and 4;2 without special education needs. The normative sample comprised data from 1424 children aged 2;0-4;2 with 51.1% boys and 48.9% girls. The data set contained information including language skills, basic demographics, birth conditions, health issues and socio-economic status (SES). OUTCOMES & RESULTS: In the HCDI-III form, six outcome variables were created to cover the domains of expressive vocabulary, morphosyntax and language use. Statistical analyses revealed appropriate psychometric properties of five outcome variables that showed a normal distribution and were strongly correlated to age. Outcomes of girls were slightly (but significantly) higher on scales corresponding to vocabulary, syntax, language use and productivity. Most variables were highly correlated with one another even with age partialled out. Multiple regression analyses revealed significant effect of age, gender and parental education on all main outcome variables. Neither one of the other eight predictors, including familial and birth-related factors, affected linguistic outcomes in our sample. CONCLUSIONS & IMPLICATIONS: The results are consistent with the majority of Communicative Development Inventory (CDI) studies, and support the psychometric eligibility of the instrument for screening purposes between 30 and 50 months. As certain regions of Hungary are characterised by a high prevalence of low-SES families, more research is needed to adapt the screening procedure and subsequent measures to their needs. WHAT THIS PAPER ADDS: What is already known on the subject Difficulties in language development are related to lower social and academic outcomes and lower quality of life from childhood to adolescence. These grave consequences might be significantly reduced by timely identification and professional support. Structured parent report forms such as the MacArthur-Bates CDI are widely accepted methods for screening children with LD. What this paper adds to existing knowledge This study reports the Hungarian adaptation and norming of the CDI-III form. Statistical analyses revealed appropriate psychometric properties of most of its sections. Language outcomes were affected by age, gender and parental education on all main outcome variables in children between 2 and 4 years of age. What are the potential or actual clinical implications of this work? The results support the psychometric eligibility of the HCDI-III instrument for screening purposes. The introduction of the screening procedure in clinical practice is expected to improve early support of children with language difficulties and reduce risks of developmental problems related to language disorders.