Health-Related Quality of Life in Children and Adolescents with Autism Spectrum Disorder
Abstract
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.
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
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.
(2000). Theory of mind and autism: A fifteen year review. In , Understanding other minds (pp. 3–20). Oxford: Oxford University Press.
(2006). ADI-R – Diagnostisches Interview für Autismus – Revidiert [
(ADI-R – Diagnostic interview for autism – revised ]. Bern: Huber.1998). The Vineland Adaptive Behavior Scales: Supplementary norms for individuals with autism. Journal of Autism & Developmental Disorders, 28, 287–302.
(2008). What can we learn about autism from autistic persons? Psychotherapy & Psychosomatics, 77, 271–279.
(2004). The functional architecture of human empathy. Behavioral and Cognitive Neuroscience Reviews, 3, 71–100.
(2007). Stability and change of IQ scores in preschool children diagnosed with autistic spectrum disorder. European Child and Adolescent Psychiatry, 16, 405–410.
(2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739–747.
(2006). Quality of life and autism. Arquivos de Neuro-Psiquiatria, 64, 295–299.
(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.
(2008). Quality of life of adults with pervasive developmental disorders and intellectual disabilities. Journal of Autism and Developmental Disorders, 38, 1654–1665.
(2000). Autism and Asperger syndrome: Coexistence with other clinical disorders. Acta Psychiatrica Scandinavica, 102, 321–330.
(2006). Foundations for self-awareness: An exploration through autism. Monographs of the Society for Research in Child Development, 71, vii–166.
(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.
(2007). The economic consequences of autistic spectrum disorder among children in a Swedish municipality. Autism, 11, 453–463.
(2006). The quality of life of young men with Asperger syndrome: A brief report. Autism, 10, 403–414.
(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.
(2008). Quality of Life as reported by school children and their parents: A cross-sectional survey. Health and Quality of Life Outcomes, 6, 34.
(2010). Health-related quality of life in adolescents and young adults with autism spectrum disorder. GMS Psycho-Social-Medicine, 7, Doc3.
(2007). Validity and psychometric properties of a quality of life questionnaire in a Hungarian child and adolescent population. Psychiatria Hungarica, 22, 33–42.
(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.
(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.
(2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147–1160.
(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.
(2007). Self-referential cognition and empathy in autism. PLoS ONE, 2, e883.
(2010). Atypical neural self-representation in autism. Brain, 133, 611–624.
(1999). Autism diagnostic observation schedule: Manual. Los Angeles: Western Psychological Services.
(1997). Evaluation of the quality of life in pediatrics: How to collect the point of view of children. Archives de Pediatrie, 4, 1238–1246.
(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.2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.
(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.
(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.
(2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10, 511–524.
(2004). ADOS: Diagnostische Beobachtungsskala für Autistische Störungen [
(Diagnostic observation schedule for autism ]. Bern: Huber.2010). Obsessive-compulsive traits in children and adolescents with Asperger syndrome. European Child and Adolescent Psychiatry, 19, 17–24.
(2009). Agreement between youth-reported and parent-reported psychopathology in a referred sample. European Child and Adolescent Psychiatry, 18, 136–143.
(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.
(2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48, 203–216.
(2009). Quality of life of family caregivers of children with autism: The mother’s perspective. Autism, 13, 81–91.
(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.
(1984). Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service.
(1999). Hamburg-Wechsler-Intelligenztest für Kinder (3. Aufl.) [
(Hamburg-Wechsler-Intelligence Scales for children (3rd ed.)]. Bern: Huber.1995). Position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409.
. (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.2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17, 895–913.
(1998). Grundintelligenztest Skala 2 (CFT 20) [
(Culture fair intelligence test (CFT 20) ]. Göttingen: Hogrefe.