Clinical and social predictors of quality of life in children and young adults with autism spectrum disorder

Česká verzia

Authors: P. Danhofer ¹; H. Dušková ²; L. Knedlíková ¹; N. Nováková ¹; O. Horák ¹; L. Dušek ³; H. Ošlejšková ¹
Authors place of work: Klinika dětské neurologie LF MU a FN Brno ¹; Přírodovědecká fakulta MU, Brno ²; Institut biostatistiky a analýz, LF MU, Brno ³
Published in the journal: Cesk Slov Neurol N 2020; 83/116(4): 382-393
Category: Original Paper
doi: https://doi.org/10.14735/amcsnn2020382

Summary

Aim: Autism spectrum disorders (ASD) are ranked among neurodevelopmental disorders with clinical manifestation in childhood characterized by difficulties in social interaction and communication, limited interests and repetitive behavior. In recent years, there has been a significant increase in the prevalence of this disorder. The disease affects the whole family and the mapping of quality of life of these patients and their families is essential.

Methods: In a group of 103 patients with ASD monitored at the Department of Pediatric Neurology of the Faculty of Medicine, Masaryk University and University Hospital Brno in 1996 -2016, the basic anamnestic and demographic data were retrospectively analyzed and four cumulative risk scores were proposed: Characteristic manifestation, deficits and stress factors; Communication; Non-specific variable features; Comorbidities. In the prospective part of the study, standardized quality of life questionnaires Subjective Quality of Life Analysis (SQUALA) and Pediatric Quality of Life Inventory (PedsQL) were evaluated in 39 patients from the set. Subsequently, the relationship between the severity of ASD expression by means of risk cumulative scores and patient quality of life was studied.

Results: Numerous incidents of communication problems and ASD manifestations were demonstrated. Of the resulting cumulative risk scores describing these dimensions, the most noticeable differences were between the different types of autism (child autism > atypical autism > Asperger syndrome). Only scores based on the frequency of occurrence of different Comorbidities did not differentiate between different types of ASD. Data from standardized SQUALA and PedsQL questionnaires showed a very critical assessment of the quality of life aspects by the parents of the affected patients and the importance of the individual quality of life attributes correlated with the severity of ASD disability which were determined on the basis of cumulative risk scores.

Conclusion: The tool for assessing cumulative risk scores has proved effective in assessing the severity of ASD involvement. It has been shown that the quality of life of the family decreases with increasing severity of disability of the ASD patient.

Keywords:

Quality of life – childhood autism – autism spectrum disorders – atypical autism – Asperger syndrome – SQUALA – PedsQL

Zdroje

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