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Gepubliceerd in: Journal of Autism and Developmental Disorders 6/2010

01-06-2010 | original paper

Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network

Auteurs: Karen Kuhlthau, Felice Orlich, Trevor A. Hall, Darryn Sikora, Erica A. Kovacs, Jennifer Delahaye, Traci E. Clemons

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 6/2010

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Abstract

We examined data collected as a part of the Autism Treatment Network, a group of 15 autism centers across the United States and Canada. Mean Health-Related Quality of Life (HRQoL) scores of the 286 children assessed were significantly lower than those of healthy populations (according to published norms). When compared to normative data from children with chronic conditions, children with ASD demonstrated worse HRQoL for total, psychosocial, emotional and social functioning, but did not demonstrate differing scores for physical and school functioning. HRQoL was not consistently related to ASD diagnosis or intellectual ability. However, it was consistently related to internalizing and externalizing problems as well as repetitive behaviors, social responsiveness, and adaptive behaviors. Associations among HRQoL and behavioral characteristics suggest that treatments aimed at improvements in these behaviors may improve HRQoL.
Literatuur
go back to reference Achenbach, T. M., & Rescorla, L. A. (2000). Manual for ASEBA school-age forms and profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, and Families. Achenbach, T. M., & Rescorla, L. A. (2000). Manual for ASEBA school-age forms and profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, and Families.
go back to reference Allik, H., Larsson, J. O., & Smedje, H. (2006). Insomnia in school-age children with asperger syndrome or high-functioning autism. BMC Psychiatry, 6, 18.CrossRefPubMed Allik, H., Larsson, J. O., & Smedje, H. (2006). Insomnia in school-age children with asperger syndrome or high-functioning autism. BMC Psychiatry, 6, 18.CrossRefPubMed
go back to reference American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders fourth edition text revision. Washington, D.C.: American Psychiatric Association.CrossRef American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders fourth edition text revision. Washington, D.C.: American Psychiatric Association.CrossRef
go back to reference Anderson, A., Moore, D. W., Godfrey, R., & Fletcher-Flinn, C. M. (2004). Social skills assessment of children with autism in free-play situations. Autism: The International Journal of Research and Practice, 8(4), 369–385. Anderson, A., Moore, D. W., Godfrey, R., & Fletcher-Flinn, C. M. (2004). Social skills assessment of children with autism in free-play situations. Autism: The International Journal of Research and Practice, 8(4), 369–385.
go back to reference Bastiaansen, D., Koot, H. M., Bongers, I. L., Varni, J. W., & Verhulst, F. C. (2004a). Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQL 4.0 generic core scales. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment. Care and Rehabilitation, 13(2), 489–495. Bastiaansen, D., Koot, H. M., Bongers, I. L., Varni, J. W., & Verhulst, F. C. (2004a). Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQL 4.0 generic core scales. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment. Care and Rehabilitation, 13(2), 489–495.
go back to reference Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Verhulst, F. C. (2004b). Quality of life in children with psychiatric disorders: Self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 221–230.CrossRefPubMed Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Verhulst, F. C. (2004b). Quality of life in children with psychiatric disorders: Self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 221–230.CrossRefPubMed
go back to reference Bauminger, N., & Kasari, C. (2000). Loneliness and friendship in high-functioning children with autism. Child Development, 71(2), 447–456.CrossRefPubMed Bauminger, N., & Kasari, C. (2000). Loneliness and friendship in high-functioning children with autism. Child Development, 71(2), 447–456.CrossRefPubMed
go back to reference Bauminger, N., & Shulman, C. (2003). The development and maintenance of friendship in high-functioning children with autism: Maternal perceptions. Autism: The International Journal of Research and Practice, 7(1), 81–97. Bauminger, N., & Shulman, C. (2003). The development and maintenance of friendship in high-functioning children with autism: Maternal perceptions. Autism: The International Journal of Research and Practice, 7(1), 81–97.
go back to reference Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high-functioning children with autism. Journal of Autism and Developmental Disorders, 33(5), 489–507.CrossRefPubMed Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high-functioning children with autism. Journal of Autism and Developmental Disorders, 33(5), 489–507.CrossRefPubMed
go back to reference Bodfish, J. W., Symons, F., & Lewis, M. (1999). The repetitive behavior scales: A test manual. Morgantown, NC: Western Carolina Center Research Reports. Bodfish, J. W., Symons, F., & Lewis, M. (1999). The repetitive behavior scales: A test manual. Morgantown, NC: Western Carolina Center Research Reports.
go back to reference Bodfish, J. W., Symons, F. J., Parker, D. E., & Lewis, M. H. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30(3), 237–243.CrossRefPubMed Bodfish, J. W., Symons, F. J., Parker, D. E., & Lewis, M. H. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30(3), 237–243.CrossRefPubMed
go back to reference Bolte, S., & Poustka, F. (2003). The recognition of facial affect in autistic and schizophrenic subjects and their first-degree relatives. Psychological Medicine, 33(5), 907–915.CrossRefPubMed Bolte, S., & Poustka, F. (2003). The recognition of facial affect in autistic and schizophrenic subjects and their first-degree relatives. Psychological Medicine, 33(5), 907–915.CrossRefPubMed
go back to reference Colgan, S. E., Lanter, E., McComish, C., Watson, L. R., Crais, E. R., & Baranek, G. T. (2006). Analysis of social interaction gestures in infants with autism. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, 12(4–5), 307–319. Colgan, S. E., Lanter, E., McComish, C., Watson, L. R., Crais, E. R., & Baranek, G. T. (2006). Analysis of social interaction gestures in infants with autism. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, 12(4–5), 307–319.
go back to reference Constantino, J. N. (2005). Social responsiveness scale. Los Angeles, CA: Western Psychological Services. Constantino, J. N. (2005). Social responsiveness scale. Los Angeles, CA: Western Psychological Services.
go back to reference Constantino, J. N., Davis, S. A., Todd, R. D., Schindler, M. K., Gross, M. M., Brophy, S. L., et al. (2003). Validation of a brief quantitative measure of autistic traits: comparison of the Social Responsiveness Scale with the Autism Diagnostic Interview-Revised. Journal of Autism and Developmental Disorders, 33, 427–433.CrossRefPubMed Constantino, J. N., Davis, S. A., Todd, R. D., Schindler, M. K., Gross, M. M., Brophy, S. L., et al. (2003). Validation of a brief quantitative measure of autistic traits: comparison of the Social Responsiveness Scale with the Autism Diagnostic Interview-Revised. Journal of Autism and Developmental Disorders, 33, 427–433.CrossRefPubMed
go back to reference Constantino, J. N., & Todd, R. D. (2005). Intergenerational transmission of subthreshold autistic traits in the general population. Biological Psychiatry, 57(6), 655–660.CrossRefPubMed Constantino, J. N., & Todd, R. D. (2005). Intergenerational transmission of subthreshold autistic traits in the general population. Biological Psychiatry, 57(6), 655–660.CrossRefPubMed
go back to reference Cotton, S., & Richdale, A. (2006). Brief report: Parental descriptions of sleep problems in children with autism, down syndrome, and prader-willi syndrome. Research in Developmental Disabilities, 27(2), 151–161.CrossRefPubMed Cotton, S., & Richdale, A. (2006). Brief report: Parental descriptions of sleep problems in children with autism, down syndrome, and prader-willi syndrome. Research in Developmental Disabilities, 27(2), 151–161.CrossRefPubMed
go back to reference Dekker, M. C., Koot, H. M., van der Ende, J., & Verhulst, F. C. (2002a). Emotional and behavioral problems in children and adolescents with and without intellectual disability. Journal of Child Psychology and Psychiatry and Allied Disciplines, 43(8), 1087–1098.CrossRef Dekker, M. C., Koot, H. M., van der Ende, J., & Verhulst, F. C. (2002a). Emotional and behavioral problems in children and adolescents with and without intellectual disability. Journal of Child Psychology and Psychiatry and Allied Disciplines, 43(8), 1087–1098.CrossRef
go back to reference Dekker, M. C., Nunn, R., & Koot, H. M. (2002b). Psychometric properties of the revised developmental behaviour checklist scales in Dutch children with intellectual disability. Journal of Intellectual Disability Research: JIDR, 46(Pt 1), 61–75.CrossRefPubMed Dekker, M. C., Nunn, R., & Koot, H. M. (2002b). Psychometric properties of the revised developmental behaviour checklist scales in Dutch children with intellectual disability. Journal of Intellectual Disability Research: JIDR, 46(Pt 1), 61–75.CrossRefPubMed
go back to reference Donovan, A. M. (1988). Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions. American Journal of Mental Retardation: AJMR, 92(6), 502–509.PubMed Donovan, A. M. (1988). Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions. American Journal of Mental Retardation: AJMR, 92(6), 502–509.PubMed
go back to reference Fayers, P. M., & Machin, D. (2007). Quality of life: The assessment, analysis and interpretation of patient-reported outcomes (2nd ed. ed.). West Sussex, England: John Wiley and Sons Ltd. Fayers, P. M., & Machin, D. (2007). Quality of life: The assessment, analysis and interpretation of patient-reported outcomes (2nd ed. ed.). West Sussex, England: John Wiley and Sons Ltd.
go back to reference Gabriels, R. L., Cuccaro, M. L., Hill, D. E., Ivers, B. J., & Goldson, E. (2005). Repetitive behaviors in autism: Relationships with associated clinical features. Research in Developmental Disabilities, 26(2), 169–181.CrossRefPubMed Gabriels, R. L., Cuccaro, M. L., Hill, D. E., Ivers, B. J., & Goldson, E. (2005). Repetitive behaviors in autism: Relationships with associated clinical features. Research in Developmental Disabilities, 26(2), 169–181.CrossRefPubMed
go back to reference Gross, T. F. (2004). The perception of four basic emotions in human and nonhuman faces by children with autism and other developmental disabilities. Journal of Abnormal Child Psychology, 32(5), 469–480.CrossRefPubMed Gross, T. F. (2004). The perception of four basic emotions in human and nonhuman faces by children with autism and other developmental disabilities. Journal of Abnormal Child Psychology, 32(5), 469–480.CrossRefPubMed
go back to reference Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National survey of children’s health. Archives of Pediatrics and Adolescent Medicine, 160(8), 825–830.CrossRefPubMed Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National survey of children’s health. Archives of Pediatrics and Adolescent Medicine, 160(8), 825–830.CrossRefPubMed
go back to reference Hill, E., Berthoz, S., & Frith, U. (2004). Brief report: Cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives. Journal of Autism and Developmental Disorders, 34(2), 229–235.CrossRefPubMed Hill, E., Berthoz, S., & Frith, U. (2004). Brief report: Cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives. Journal of Autism and Developmental Disorders, 34(2), 229–235.CrossRefPubMed
go back to reference Hobson, R. P., & Lee, A. (1998). Hello and goodbye: A study of social engagement in autism. Journal of Autism and Developmental Disorders, 28(2), 117–127.CrossRefPubMed Hobson, R. P., & Lee, A. (1998). Hello and goodbye: A study of social engagement in autism. Journal of Autism and Developmental Disorders, 28(2), 117–127.CrossRefPubMed
go back to reference Klassen, A. F., Miller, A., & Fine, S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics, 114(5), e541–e547.CrossRefPubMed Klassen, A. F., Miller, A., & Fine, S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics, 114(5), e541–e547.CrossRefPubMed
go back to reference Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr, Leventhal, B. L., DiLavore, P. C., et al. (2000). The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205–223.CrossRefPubMed Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr, Leventhal, B. L., DiLavore, P. C., et al. (2000). The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205–223.CrossRefPubMed
go back to reference Lord, C., Rutter, M., & Le Couteur, A. (2003). Autism diagnostic interview-revised. Los Angeles, CA: Western Psychological Services. Lord, C., Rutter, M., & Le Couteur, A. (2003). Autism diagnostic interview-revised. Los Angeles, CA: Western Psychological Services.
go back to reference McGovern, C. W., & Sigman, M. (2005). Continuity and change from early childhood to adolescence in autism. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46(4), 401–408.CrossRef McGovern, C. W., & Sigman, M. (2005). Continuity and change from early childhood to adolescence in autism. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46(4), 401–408.CrossRef
go back to reference Mullen, E. M. (1997). Mullen scales of early learning. Los Angeles: Western Psychological Services. Mullen, E. M. (1997). Mullen scales of early learning. Los Angeles: Western Psychological Services.
go back to reference Oyane, N. M., & Bjorvatn, B. (2005). Sleep disturbances in adolescents and young adults with autism and asperger syndrome. Autism: The International Journal of Research and Practice, 9(1), 83–94. Oyane, N. M., & Bjorvatn, B. (2005). Sleep disturbances in adolescents and young adults with autism and asperger syndrome. Autism: The International Journal of Research and Practice, 9(1), 83–94.
go back to reference Roid, G. H. (2003). Stanford binet intelligence scales (5th ed.). Itasca, IL: Riverside Publishing. Roid, G. H. (2003). Stanford binet intelligence scales (5th ed.). Itasca, IL: Riverside Publishing.
go back to reference Sparrow, S. S., Balla, D., & Cicchetti, D. V. (1984). Vineland adaptive behavior scales (Survey). Circle Pines, MN: American Guidance Service. Sparrow, S. S., Balla, D., & Cicchetti, D. V. (1984). Vineland adaptive behavior scales (Survey). Circle Pines, MN: American Guidance Service.
go back to reference Sparrow, S. S., Cicchetti, D. V., & Balla, D. (2005). The vineland II adaptive behavior scales. Circle Pines, MN: American Guidance Service. Sparrow, S. S., Cicchetti, D. V., & Balla, D. (2005). The vineland II adaptive behavior scales. Circle Pines, MN: American Guidance Service.
go back to reference Storch, E. A., Merlo, L. J., Lack, C., Milsom, V. A., Geffken, G. R., Goodman, W. K., et al. (2007). Quality of life in youth with tourette’s syndrome and chronic tic disorder. Journal of Clinical Child and Adolescent Psychology: The Official Journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53, 36(2), 217–227. Storch, E. A., Merlo, L. J., Lack, C., Milsom, V. A., Geffken, G. R., Goodman, W. K., et al. (2007). Quality of life in youth with tourette’s syndrome and chronic tic disorder. Journal of Clinical Child and Adolescent Psychology: The Official Journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53, 36(2), 217–227.
go back to reference Teunisse, J. P., & de Gelder, B. (2001). Impaired categorical perception of facial expressions in high-functioning adolescents with autism. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, 7(1), 1–14. Teunisse, J. P., & de Gelder, B. (2001). Impaired categorical perception of facial expressions in high-functioning adolescents with autism. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, 7(1), 1–14.
go back to reference Varni, J. W. (1998). Pediatric quality of life inventory version 4.0. Lyon, France: Mapi Research Institute. Varni, J. W. (1998). Pediatric quality of life inventory version 4.0. Lyon, France: Mapi Research Institute.
go back to reference Varni, J. W., & Burwinkle, T. M. (2006). The PedsQL as a patient-reported outcome in children and adolescents with attention-Deficit/Hyperactivity disorder: A population-based study. Health and Quality of Life Outcomes, 4, 26.CrossRefPubMed Varni, J. W., & Burwinkle, T. M. (2006). The PedsQL as a patient-reported outcome in children and adolescents with attention-Deficit/Hyperactivity disorder: A population-based study. Health and Quality of Life Outcomes, 4, 26.CrossRefPubMed
go back to reference Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics: The Official Journal of the Ambulatory Pediatric Association, 3(6), 329–341. Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics: The Official Journal of the Ambulatory Pediatric Association, 3(6), 329–341.
go back to reference Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.CrossRefPubMed Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.CrossRefPubMed
go back to reference Wallander, J. L., Dekker, M. C., & Koot, H. M. (2006). Risk factors for psychopathology in children with intellectual disability: A prospective longitudinal population-based study. Journal of Intellectual Disability Research: JIDR, 50(Pt 4), 259–268.CrossRefPubMed Wallander, J. L., Dekker, M. C., & Koot, H. M. (2006). Risk factors for psychopathology in children with intellectual disability: A prospective longitudinal population-based study. Journal of Intellectual Disability Research: JIDR, 50(Pt 4), 259–268.CrossRefPubMed
go back to reference Williams, G., Sears, L. L., & Allard, A. (2004). Sleep problems in children with autism. Journal of Sleep Research, 13(3), 265–268.CrossRef Williams, G., Sears, L. L., & Allard, A. (2004). Sleep problems in children with autism. Journal of Sleep Research, 13(3), 265–268.CrossRef
Metagegevens
Titel
Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network
Auteurs
Karen Kuhlthau
Felice Orlich
Trevor A. Hall
Darryn Sikora
Erica A. Kovacs
Jennifer Delahaye
Traci E. Clemons
Publicatiedatum
01-06-2010
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 6/2010
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-009-0921-2

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