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

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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.

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Acknowledgments

We would like to thank Autism Speaks for funding this work and Brian Winklosky, Joyce Shu, and Kirsten Klatka for their help managing the project. We would also like to thank the Autism Treatment Network’s leadership at each of the data collection sites: Diane Treadwell-Deering, MD, Daniel Glaze, MD, Wendy Roberts, MD, Alvin Loh, MD, Patricia Manning-Courtney, MD, Cynthia Molloy, MD, MS, Agnes Whitaker, MD, Reet Sidhu, MD, Lisa Croen, PhD, Pilar Bernal, MD, Rebecca Landa, PhD, Stewart Mostofsky, MD, Margaret Bauman, MD, Martha Herbert, MD, PhD, Robert Steiner, MD, Jill James, PhD, Eldon Schulz, MD, Jill Fussell, MD, Cordelia Robinson, PhD, RN, Ann Reynolds, MD, Susan Hepburn, PhD, Judith Miles, MD, PhD, Stephen Kanne, PhD, Nancy Minshew, MD, Cynthia Johnson, PhD, Benjamin Handen, PhD, Susan Hyman, MD, Tristram Smith, PhD, Wendy Stone, PhD, Beth Malow, MD, Bryan King, MD, Raphael Bernier, PhD.

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Authors and Affiliations

  1. Center for Child and Adolescent Health Policy, Massachusetts General Hospital, Boston, MA, USA

    Karen Kuhlthau & Jennifer Delahaye

  2. Department of Pediatrics, Harvard Medical School, 50 Staniford Street, Suite 901, Boston, MA, 02114, USA

    Karen Kuhlthau

  3. Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, USA

    Felice Orlich

  4. Autism Program, Seattle Children’s Hospital, Seattle, WA, USA

    Felice Orlich

  5. Warm Springs Autism Diagnostic & Treatment Center, Portland, OR, USA

    Trevor A. Hall

  6. Oregon Health & Science University, Portland, OR, USA

    Trevor A. Hall & Darryn Sikora

  7. Columbia Developmental Neuropsychiatry Program, Division of Child and Adolescent Psychiatry, Columbia University Medical Center, New York, NY, USA

    Erica A. Kovacs

  8. The EMMES Corporation, Potomac, MD, USA

    Traci E. Clemons

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  1. Karen Kuhlthau
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  2. Felice Orlich
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Correspondence to Karen Kuhlthau.

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Kuhlthau, K., Orlich, F., Hall, T.A. et al. Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network. J Autism Dev Disord 40, 721–729 (2010). https://doi.org/10.1007/s10803-009-0921-2

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