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

Czech version

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

Overview

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

Sources

1. Arvidsson T, Danielsson B, Forsberg P et al. Autism in 3–6-year-old children in a suburb of Goteborg, Sweden. Autism 1997; 1 (2): 163–173. doi: 10.1177/1362361397012 004

2. Baird G, Charman T, Baron-Cohen S et al. A screening instrument for autism in 18 months of age: a 6-year-follow-up study. J Am Acad Child and Adolesc Psychiatry 2000; 39 (6): 694–702. doi: 10.1097/00004583-200006000-00007.

3. Yin J, Schaaf CP. Autism genetics – an overview. Prenatal Diagnosis 2017; 37 (1): 14–30. doi: 10.1002/pd. 4942.

4. Weintraub K. The prevalence puzzle: Autism counts. Nature 2011; 479 (7371): 22–24. doi: 10.1038/479 022a.

5. Felce D. Definign and applying he concept of quality of life. J Intellect Disabil Res 1997; 41 (Pt 2): 126–135. doi: 10.1111/j.1365-2788.1997.tb00689.x.

6. Mezinárodní statistická klasifikace nemocí a při-družených zdravotních problémů: MKN-10: desátá revize: aktualizovaná druhá verze k 1. 1. 2009. 2. vyd. Praha: Bomton Agency 2008.

7. Schopler E, Reichler JR, DeVellis RF et al. Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS). J Aut Dev Dis 1980; 10 (1): 91–103. doi: 10.1007/BF02408436.

8. Williams JG, Allison C, Scott FJ et al. The Childhood Autism Spectrum Test (CAST). J Autism Dev Disord 2008; 38 (9): 1731–1739. doi: 10.1007/s10803-008-0558-6.

9. Knobloch H, Stevens F, Malone A. Manual of developmental diagnosis: the administration and interpretation of the revised Gesell and Amatruda developmental and neurologic examination. Philadelphia, USA: Harper & Row 1980.

10. Youngstrom EA, Glutting JJ, Watkins MW. Stanford-Binet Intelligence Scale: Fourth Edition (SB4): evaluating the empirical bases for interpretations. In: Reynolds CR, Kamphaus RW (eds.). Handbook of psychologicaland educational assessment: intelligence, aptitude, and achievement. 2nd ed. New York: Guilford 2003: 217–242.

11. PedsQL TM (Pediatric Quality of Life Inventory TM). [online]. Abailable from URL: http: //www.pedsql.org/about_pedsql.html.

12. Dragomirecká E. Subjective Quality of Life Analysis: Příručka pro uživatele české verze Dotazníku subjektivní kvality života SQUALA. 1. vyd. Praha: Psychiatrické centrum 2006.

13. Ošlejšková H. Časné klinické projevy autismu v dětství a mládí jsou klíčem k včasné diagnóze. Pediatr Praxi 2008; 9 (3): 161–163.

14. Rahman R, Kodesh A, Levine SZ et al. Identification of newborns at risk for autism using electronic medical records and machine learning. Eur Psychiatry 2020; 63 (1): e22. doi: 10.1192/j.eurpsy.2020.

15. Davis T, Clifton D, Papadopoulos C. Identifying autism early: the toddlers at risk of autism clinic model. J Pediatr Child Health 2015; 51 (7): 699–703.

16. Levy SE, Wolfe A, Coury D et al. Screening tools for Autism spectrum disorder in primary care: a systematic evidence review. Pediatrics 2020; 145 (Suppl 1): S47–S59. doi: 10.1542/peds.2019-1895H.

17. Johnson CP, Myers SM. Identification and evaluation of children with autism spectrum disorders. Pediatrics 2007; 120 (5): 1183–1215. doi: 10.1542/peds.2007-2361.

18. Rathouská L. Vliv autismu u dítěte na zdraví a kvalitu života rodičů. Praha: Univerzita Karlova, Lékařská fakulta 2017.

19. Vasilopoulou E, Nisbet J. The quality of life of parents of children with autism spectrum disorder: a systematic review. Res Autism Spectr Disord 2016; 23 (Suppl C): 36–49. doi: 10.1016/j.rasd.2015.11.008.

20. Mugno D, Ruta L, D’Arrigo VG et al. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 2007; 5: 22. doi: 10.1186/1477-7525-5-22.

21. Garrido D, Carballo G, Garcia-Retamero R. Siblings and children with autism spectrum disorders: social support and family quality of life. Qual Life Res 2020; 29 (5): 1193–1202. doi: 10.1007/s11136-020-02429-1.