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Originalarbeiten/Original articles

Health-Related Quality of Life in Children and Adolescents with Autism Spectrum Disorder

Published Online:https://doi.org/10.1024/1422-4917/a000098

Objective: This study evaluates self- and proxy-reported health-related quality of life (HRQOL) in children and adolescents with autism spectrum disorders (ASD). The study also compares HRQOL in ASD patients with a healthy control sample and a psychiatric reference sample. Method: 42 children and adolescents (39 male, mean age: 12.7 ± 2.6 years, mean IQ: 100.5 ± 20.7) with the diagnosis of autism spectrum disorder (ASD) and their parents completed the Inventory for the Assessment of Quality of Life in Children and Adolescents (ILK). Results: Mean ILK LQ 0–28 scores were 20.6 (± 4.6) (self-report version) and 18.2 (± 4.0) (proxy version). Compared to a reference sample, mean ILK scores from the ASD sample were at the 47th percentile (self-report) and the 33rd percentile (proxy). Compared to children and adolescents with psychiatric disorders, self-reported ILK scores correlated with the 69th percentile, and proxy-reported ILK scores correlated with the 67th percentile. Self-reported HRQOL was significantly higher than proxy-reported HRQOL. No significant correlation was found between HRQOL and age, IQ, or autistic symptoms. Conclusions: HRQOL in children and adolescents with ASD seems to be better than in other psychiatric disorders, but lower than in healthy controls.


Gesundheitsbezogene Lebensqualität von Kindern und Jugendlichen mit Autismus-Spektrum-Störung

Fragestellung: Ziel der Studie war die Untersuchung der gesundheitsbezogenen Lebensqualität (gbLQ) von Kindern und Jugendlichen mit Autismus-Spektrum-Störung (ASD), wobei die gbLQ sowohl durch die Kinder als auch durch die Eltern eingeschätzt wurde. Die Ergebnisse wurden mit denen einer gesunden und einer psychiatrischen Referenzstichprobe verglichen. Methodik: 42 Kinder und Jugendliche (39 männlich, durchschnittliches Alter 12.7 ± 2.6 Jahre, durchschnittlicher IQ: 100.5 ± 20.7) mit der Diagnose einer Autismus-Spektrum-Störung (ASD) und deren Eltern füllten das Inventar zur Erfassung der Lebensqualität (ILK) aus. Ergebnisse: Im Durchschnitt lagen die Werte (ILK LQ 0–28-Skala) bei 20.6 (± 4.6) (Selbstbeurteilung) bzw. bei 18.2 (± 4.0) (Fremdbeurteilung). Verglichen mit einer Stichprobe gesunder Kinder lag der ILK-Wert der ASD-Gruppe auf der 47. Perzentile (Selbstbeurteilung) und der 33. Perzentile (Fremdbeurteilung). Verglichen mit der Referenzstichprobe der Kinder und Jugendlichen mit psychiatrischen Störungen lag der ILK-Wert auf der 69. Perzentile (Selbsteinschätzung) bzw. auf der 67. Perzentile (Fremdeinschätzung). Die Kinder und Jugendlichen schätzten ihre gbLQ signifikant höher ein als die Eltern. Es zeigte sich keine signifikante Korrelation zwischen gbLQ und Alter, IQ oder der autistischen Symptomatik. Schlussfolgerungen: Die gbLQ von Kindern und Jugendlichen mit ASD scheint besser zu sein als die von Patienten mit anderen psychiatrischen Störungsbildern, aber schlechter als die einer gesunden Stichprobe.

References

  • Allik, H. , Larsson, J.-O. , Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger Syndrome or High-Functioning Autism. Health and Quality of Life Outcomes, 4, 1. First citation in articleCrossref MedlineGoogle Scholar

  • Baron-Cohen, S. (2000). Theory of mind and autism: A fifteen year review. In S. Baron-Cohen, H. Tager-Flusberg, D. J. Cohen (Eds.), Understanding other minds (pp. 3–20). Oxford: Oxford University Press. First citation in articleGoogle Scholar

  • Bölte, S. , Rühl, D. , Schmötzer, G. , Poustka, F. (2006). ADI-R – Diagnostisches Interview für Autismus – Revidiert [ADI-R – Diagnostic interview for autism – revised]. Bern: Huber. First citation in articleGoogle Scholar

  • Carter, A. S. , Volkmar, F. R. , Sparrow, S. S. , Wang, J. J. , Lord, C. , Dawson, G. , ... Schopler, E. (1998). The Vineland Adaptive Behavior Scales: Supplementary norms for individuals with autism. Journal of Autism & Developmental Disorders, 28, 287–302. First citation in articleCrossref MedlineGoogle Scholar

  • Chamak, B. , Bonniau, B. , Jaunay, E. , Cohen, D. (2008). What can we learn about autism from autistic persons? Psychotherapy & Psychosomatics, 77, 271–279. First citation in articleCrossref MedlineGoogle Scholar

  • Decety, J. , Jackson, P. L. (2004). The functional architecture of human empathy. Behavioral and Cognitive Neuroscience Reviews, 3, 71–100. First citation in articleCrossref MedlineGoogle Scholar

  • Dietz, C. , Swinkels, S. H. N. , Buitelaar, J. K. , van Daalen, E. , van Engeland, H. (2007). Stability and change of IQ scores in preschool children diagnosed with autistic spectrum disorder. European Child and Adolescent Psychiatry, 16, 405–410. First citation in articleCrossref MedlineGoogle Scholar

  • Eaves, L. C. , Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739–747. First citation in articleCrossref MedlineGoogle Scholar

  • Elias, A. V. , Assumpcão, F. B., Jr. (2006). Quality of life and autism. Arquivos de Neuro-Psiquiatria, 64, 295–299. First citation in articleCrossref MedlineGoogle Scholar

  • Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health and Illness, 31, 1011–1027. First citation in articleCrossref MedlineGoogle Scholar

  • Gerber, F. , Baud, M. A. , Giroud, M. , Galli Carminati, G. (2008). Quality of life of adults with pervasive developmental disorders and intellectual disabilities. Journal of Autism and Developmental Disorders, 38, 1654–1665. First citation in articleCrossref MedlineGoogle Scholar

  • Gillberg, C. , Billstedt, E. (2000). Autism and Asperger syndrome: Coexistence with other clinical disorders. Acta Psychiatrica Scandinavica, 102, 321–330. First citation in articleCrossref MedlineGoogle Scholar

  • Hobson, P. R. , Chidambi, G. , Lee, A. , Meyer, J. (2006). Foundations for self-awareness: An exploration through autism. Monographs of the Society for Research in Child Development, 71, vii–166. First citation in articleCrossref MedlineGoogle Scholar

  • Howlin, P. (2003). Outcome in high-functioning adults with autism with and without early language delays: Implications for the differentiation between autism and Asperger syndrome. Journal of Autism and Developmental Disorders, 33, 3–13. First citation in articleCrossref MedlineGoogle Scholar

  • Jarbrink, K. (2007). The economic consequences of autistic spectrum disorder among children in a Swedish municipality. Autism, 11, 453–463. First citation in articleCrossref MedlineGoogle Scholar

  • Jennes-Coussens, M. , Magill-Evans, J. , Koning, C. (2006). The quality of life of young men with Asperger syndrome: A brief report. Autism, 10, 403–414. First citation in articleCrossref MedlineGoogle Scholar

  • Johnson, S. A. , Filiter, J. H. , Murphy, R. R. (2009). Discrepancies between self- and parent-perceptions of autistic traits and empathy in high functioning children and adolescents on the autism spectrum. Journal of Autism and Developmental Disorders, 39, 1706–1714. First citation in articleCrossref MedlineGoogle Scholar

  • Jozefiak, T. , Larsson, B. , Wichstrom, L. , Mattejat, F. , Ravens-Sieberer, U. (2008). Quality of Life as reported by school children and their parents: A cross-sectional survey. Health and Quality of Life Outcomes, 6, 34. First citation in articleCrossref MedlineGoogle Scholar

  • Kamp-Becker, I. , Schröder, J. , Remschmidt, H. , Bachmann, C. J. (2010). Health-related quality of life in adolescents and young adults with autism spectrum disorder. GMS Psycho-Social-Medicine, 7, Doc3. First citation in articleGoogle Scholar

  • Kiss, E. , Baji, I. , Mayer, L. , Skulteti, D. , Benak, I. , Vetro, A. (2007). Validity and psychometric properties of a quality of life questionnaire in a Hungarian child and adolescent population. Psychiatria Hungarica, 22, 33–42. First citation in articleMedlineGoogle Scholar

  • Klin, A. , Saulnier, C. A. , Sparrow, S. S. , Cicchetti, D. V. , Volkmar, F. R. , Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of Autism and Developmental Disorders, 37, 748–759. First citation in articleCrossref MedlineGoogle Scholar

  • Kuhlthau, K. , Orlich, F. , Hall, T. A. , Sikora, D. , Kovacs, E. A. , Delahaye, J. , Clemons, T. E. (2010). Health-related quality of life in children with autism spectrum disorders: Results from the autism treatment network. Journal of Autism and Developmental Disorders, 40, 721–729. First citation in articleCrossref MedlineGoogle Scholar

  • Lee, L.-C. , Harrington, R. A. , Louie, B. B. , Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147–1160. First citation in articleCrossref MedlineGoogle Scholar

  • Limbers, C. A. , Heffer, R. W. , Varni, J. W. (2009). Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s Syndrome utilizing the PedsQL. Journal of Autism and Developmental Disorders, 39, 1529–1541. First citation in articleCrossref MedlineGoogle Scholar

  • Lombardo, M. V. , Barnes, J. L. , Wheelwright, S. J. , Baron-Cohen, S. (2007). Self-referential cognition and empathy in autism. PLoS ONE, 2, e883. First citation in articleGoogle Scholar

  • Lombardo, M. V. , Chakrabarti, B. , Bullmore, E. T. , Sadek, S. A. , Pasco, G. , Wheelwright, S. J. , ... Baron-Cohen, S. (2010). Atypical neural self-representation in autism. Brain, 133, 611–624. First citation in articleCrossref MedlineGoogle Scholar

  • Lord, C. , Rutter, M. , DiLavore, P. S. , Risi, S. (1999). Autism diagnostic observation schedule: Manual. Los Angeles: Western Psychological Services. First citation in articleGoogle Scholar

  • Manificat, S. , Dazord, A. , Cochat, P. , Nicolas, J. (1997). Evaluation of the quality of life in pediatrics: How to collect the point of view of children. Archives de Pediatrie, 4, 1238–1246. First citation in articleCrossref MedlineGoogle Scholar

  • Mattejat, F. , Remschmidt, H. (2006). ILK. Inventar zur Erfassung der Lebensqualität bei Kindern und Jugendlichen. Manual [Inventory for the assessment of the quality of life in children and adolescents (manual)]. Bern: Huber. First citation in articleGoogle Scholar

  • Mugno, D. , Ruta, L. , D’Arrigo, V. G. , Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22. First citation in articleCrossref MedlineGoogle Scholar

  • Persson, B. (2000). Brief report: A longitudinal study of quality of life and independence among adult men with autism. Journal of Autism and Developmental Disorders, 30, 61–66. First citation in articleCrossref MedlineGoogle Scholar

  • Ravens-Sieberer, U. , Wille, N. , Erhart, M. , Bettge, S. , Wittchen, H.-U. , Rothenberger, A. , ... Döpfner, M. (2008). Prevalence of mental health problems among children and adolescents in Germany: Results of the BELLA study within the National Health Interview and Examination Survey. European Child and Adolescent Psychiatry, 17(Suppl. 1), 22–33. First citation in articleCrossref MedlineGoogle Scholar

  • Renty, J. O. , Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10, 511–524. First citation in articleCrossref MedlineGoogle Scholar

  • Rühl, D. , Bölte, S. , Feineis-Matthews, S. , Poustka, F. (2004). ADOS: Diagnostische Beobachtungsskala für Autistische Störungen [Diagnostic observation schedule for autism]. Bern: Huber. First citation in articleGoogle Scholar

  • Ruta, L. , Mugno, D. , D’Arrigo, V. G. , Vitiello, B. , Mazzone, L. (2010). Obsessive-compulsive traits in children and adolescents with Asperger syndrome. European Child and Adolescent Psychiatry, 19, 17–24. First citation in articleCrossref MedlineGoogle Scholar

  • Salbach-Andrae, H. , Klinkowski, N. , Lenz, K. , Lehmkuhl, U. (2009). Agreement between youth-reported and parent-reported psychopathology in a referred sample. European Child and Adolescent Psychiatry, 18, 136–143. First citation in articleCrossref MedlineGoogle Scholar

  • Saulnier, C. A. , Klin, A. (2007). Brief report: Social and communication abilities and disabilities in higher functioning individuals with autism and Asperger syndrome. Journal of Autism and Developmental Disorders, 37, 788–793. First citation in articleCrossref MedlineGoogle Scholar

  • Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48, 203–216. First citation in articleCrossref MedlineGoogle Scholar

  • Shu, B.-C. (2009). Quality of life of family caregivers of children with autism: The mother’s perspective. Autism, 13, 81–91. First citation in articleCrossref MedlineGoogle Scholar

  • Simonoff, E. , Pickles, A. , Charman, T. , Chandler, S. , Loucas, T. , Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47, 921–929. First citation in articleCrossref MedlineGoogle Scholar

  • Sparrow, S. S. , Balla, D. A. , Cicchetti, D. V. (1984). Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service. First citation in articleGoogle Scholar

  • Tewes, U. , Rossmann, R. , Schallberger, R. (1999). Hamburg-Wechsler-Intelligenztest für Kinder (3. Aufl.) [Hamburg-Wechsler-Intelligence Scales for children (3rd ed.)]. Bern: Huber. First citation in articleGoogle Scholar

  • The World Health Organization Quality of Life assessment (WHOQOL) . (1995). Position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409. First citation in articleCrossref MedlineGoogle Scholar

  • Unnewehr, S. , Schneider, S. , Margraf, J. (1998). Kinder-DIPS – Diagnostisches Interview bei psychischen Störungen im Kindes- und Jugendalter [Children-DIPS – Diagnostic Interview for Mental Disorders in children and adolescents]. Berlin: Springer-Verlag. First citation in articleGoogle Scholar

  • Upton, P. , Lawford, J. , Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17, 895–913. First citation in articleCrossref MedlineGoogle Scholar

  • Weiss, R. H. (1998). Grundintelligenztest Skala 2 (CFT 20) [Culture fair intelligence test (CFT 20)]. Göttingen: Hogrefe. First citation in articleGoogle Scholar