Maternal and Child Health Research Program

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Advancing Applied MCH Research

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Autism Intervention Research Network on Physical Health (AIR-P Network)

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Project Number: UA3 MC 11054-04
Grantee: Massachusetts General Hospital
Department/Center: Pediatrics/Center for Child and Adolescent Health Policy
Project Date: 9/1/2008

Final Report

Pending

Principal Investigator

James M. Perrin, M.D.
Professor of Pediatrics
50 Staniford Street, #901
Boston, MA  02114
Phone: (617) 726-1885
Email: jperrin@partners.org

Age

  • Toddlerhood (1-2 years)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)

Abstract

Problem: Children and adolescents with autism spectrum disorders (ASD) experience a constellation of associated medial conditions that are poorly understood. As a result, families are underserved and face substantial difficulty accessing adequate health care. Major barriers include the lack of standard diagnostic and treatment procedures to guide medical care, and a scarcity of primary and specialty health care providers with the training and experience to identify and treat medical conditions in this population. The Autism Speaks Treatment Network (ATN), established in 2005, aims to improve care and outcomes for children and adolescents with ASD. Purpose: To assist the MCHB and interested parties in carrying out hypothesis-driven research and development of evidence-based guidelines to transform clinical care and improve physical health of children with ASD. Goals and Objectives: Our objectives are to 1) conduct research on evidence-based practices to improve the health of young children with ASD, 2) develop and mentor new investigators, 3) develop evidence-based guidelines for care, 4) disseminate network findings to clinicians and families, and 5) foster the transfer of network findings to the broader community. Methodology: We will conduct two major research studies, 1) an RCT to treat overweight associated with medications used to treat ASD and 2) an RCT of an intervention to treat sleep problems in children with ASD who manifest iron deficiency. We also propose network competitions for additional research projects, some of which will support new investigators. We also carry out mentoring via webinars, and complement the evidence development with new guidelines and dissemination activities that will include webinars and presentations at key conferences. We will also develop an Autism Collbaborative to transfer network findings to primary care settings and broader community practice. The Network Steering Committee will provider oversight on the strategic direction of the AIR-P including new research. Coordination: The team comprises leaders in ASD advocacy and health policy, expert clinicians and researchers from diverse child health specialties, and an advisory group with expertise in the guidelines and evaluation. We will work closely with the LEND network, and key stakeholders, such as Autism Speaks and the American Academy of Pediatrics. Evaluation: Each objective has an evaluative component to measure the effectiveness of the interventions in primary care and community based practice settings. We will measure the efficacy of each project through the publication and presentation of research findings, development of guidelines, web-based educational programs, and newsletters. Annotation: Although children with ASD face numerous medical co-morbidities, they do not receive adequate medical care. The AIR-P will improve care for children with ASD through clinically relevant research projects, development and implementation of guidelines, transfer of key findings and system management approaches into practice setings and communities, and dissemination of findings to key stakeholders through publications, trainings and conference presentations.

Publications

Listed is descending order by year published.

Kanne SM, Mazurek MO, Sikora D, Bellando J, Branum-Martin L, Handen B, Katz T, Freedman B, Powell MP, Warren Z. The Autism Impact Measure (AIM): Initial Development of a New Tool for Treatment Outcome Measurement. J Autism Dev Disord. 2014 Jan;44(1):168-79. doi: 10.1007/s10803-013-1862-3. PubMed PMID: 23748386.

Malow BA, Adkins KW, Reynolds A, Weiss SK, Loh A, Fawkes D, Katz T, Goldman SE, Madduri N, Hundley R, Clemons T. Parent-based sleep education for children with autism spectrum disorders. J Autism Dev Disord. 2014 Jan;44(1):216-28. doi: 10.1007/s10803-013-1866-z. PubMed PMID: 23754339; PubMed Central PMCID: PMC3818449.

Ameis SH, Corbett-Dick P, Cole L, Correll CU. Decision making and antipsychotic medication treatment for youth with autism spectrum disorders: applying guidelines in the real world. J Clin Psychiatry. 2013 Oct;74(10):1022-4. doi: 10.4088/JCP.13ac08691. PubMed PMID: 24229756.

Coury DL. DSM-5 and autism spectrum disorders: implications for families and clinicians. J Dev Behav Pediatr. 2013 Sep;34(7):494-6. doi: 10.1097/DBP.0b013e31829cac3e. PubMed PMID: 24042080

Hamlin JC, Pauly M, Melnyk S, Pavliv O, Starrett W, Crook TA, James SJ. Dietary intake and plasma levels of choline and betaine in children with autism spectrum disorders. Autism Res Treat. 2013;2013:578429. doi: 10.1155/2013/578429. Epub 2013 Dec 16. PubMed PMID: 24396597; PubMed Central PMCID: PMC3876775.

Kaat AJ, Lecavalier L, Aman MG. Validity of the Aberrant Behavior Checklist in Children with Autism Spectrum Disorder. J Autism Dev Disord. 2013 Oct 29. [Epub ahead of print] PubMed PMID: 24165702.

Mazurek MO, Kanne SM, Wodka EL. Physical aggression in children and adolescents with autism spectrum disorders. Research in Autism Spectrum Disorders. 2013;7(3):455-465.

Mazurek MO, Vasa RA, Kalb LG, Kanne SM, Rosenberg D, Keefer A, Murray DS, Freedman B, Lowery LA. Anxiety, sensory over-responsivity, and gastrointestinal problems in children with autism spectrum disorders. J Abnorm Child Psychol. 2013 Jan;41(1):165-76. doi: 10.1007/s10802-012-9668-x. PubMed PMID: 22850932.

Peters B, Williams KC, Gorrindo P, Rosenberg D, Lee EB, Levitt P, Veenstra-Vanderweele J. Rigid-Compulsive Behaviors are Associated with Mixed Bowel Symptoms in Autism Spectrum Disorder. J Autism Dev Disord. 2013 Nov 29. [Epub ahead of print] PubMed PMID: 24293040.

Sikora D, Moran E, Orlich F, et al. The relationship between family functioning and behavior problems in children with autism spectrum disorders. Research in Autism Spectrum Disorders. 2013;7(2):307-315.

Adkins KW, Goldman SE, Fawkes D, et al. A pilot study of shoulder placement for actigraphy in children. Behavioral Sleep Medicine. 2012;10(2):138-147.

Adkins KW, Molloy C, Weiss SK, et al. Effects of a standardized pamphlet on insomnia in children with autism spectrum disorders. Pediatrics. 2012;130(Suppl 2):S139-44.

Coury DL, Anagnostou E, Manning-Courtney P, et al. Use of psychotropic medication in children and adolescents with autism spectrum disorders. Pediatrics. 2012;130(Suppl 2):S69-76.

Coury DL, Ashwood P, Fasano A, et al. Gastrointestinal conditions in children with autism spectrum disorder: Developing a research agenda. Pediatrics. 2012;130(Suppl 2):S160-168.

Furuta GT, Williams K, Kooros K, et al. Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics. 2012;130(Suppl 2):S98.

Goldman SE, Richdale AL, Clemons T, Malow BA. Parental sleep concerns in autism spectrum disorders: variations from childhood to adolescence. J Autism Dev Disord. 2012 Apr;42(4):531-538.

Hyman SL, Stewart PA, Schmidt B, et al. Nutrient intake from food in children with autism. Pediatrics. 2012;130(Suppl 2):S145-53.

Lajonchere C, Jones N, Coury DL, Perrin JM. Leadership in health care, research, and quality improvement for children and adolescents with autism spectrum disorders: Autism treatment network and autism intervention research network on physical health. Pediatrics. 2012;130(Suppl 2):S62-68.

Mahajan R, Bernal MP, Panzer R, et al. Clinical practice pathways for evaluation and medication choice for attention-deficit/hyperactivity disorder symptoms in autism spectrum disorders. Pediatrics. 2012;130(Suppl 2):S125-38.

Malow BA, Byars K, Johnson K, et al. A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012;130(Suppl 2):S106-24.

Neumeyer AM, Gates A, Ferrone C, Lee H, Misra M. Bone Density in Peripubertal Boys with Autism Spectrum Disorders. J Autism Dev Disord. 2012 Nov 4. [Epub ahead of print] PubMed PMID: 23124396.

Perrin JM, Coury DL, Hyman SL, Cole L, Reynolds AM, Clemons T. Complementary and alternative medicine use in a large pediatric autism sample. Pediatrics. 2012;130(Suppl 2):S77-82.

Perrin JM, Coury DL, Jones N, Lajonchere C. The autism treatment network and autism intervention research network on physical health: Future directions. Pediatrics. 2012;130(Suppl 2):S198-201.

Perrin JM, Coury DL. Improving health care for children and youth with autism and other neurodevelopmental disorders. editors' note and prologue. Pediatrics. 2012;130(Suppl 2):S57-8.

Reynolds A, Krebs NF, Stewart PA, Austin H, Johnson SL, Withrow N, Molloy C, James SJ, Johnson C, Clemons T, Schmidt B, Hyman SL. Iron status in children with autism spectrum disorder. Pediatrics. 2012 Nov;130 Suppl 2:S154-9. doi: 10.1542/peds.2012-0900M. PubMed PMID: 23118246.

Sikora DM, Johnson K, Clemons T, Katz T. The relationship between sleep problems and daytime behavior in children of different ages with autism spectrum disorders. Pediatrics. 2012;130(Suppl 2):S83-90.

Sikora DM, Vora P, Coury DL, Rosenberg D. Attention-deficit/hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder. Pediatrics. 2012;130(Suppl 2):S91-7.

Tilford JM, Payakachat N, Kovacs E, et al. Preference-based health-related quality-of-life outcomes in children with autism spectrum disorders: A comparison of generic instruments. Pharmacoeconomics. 2012;30(8):661-679.

Coury D. Very little high-quality evidence to support most medications for children with autism spectrum disorders. J Pediatr. 2011; 159(5):872-873.

Coury DL. Review: Little evidence of clear benefit for most medical treatments for children with autism spectrum disorders. Evid Based Ment Health. 2011 Nov;14(4):105.

Goldman S, McGrew S, Johnson K, Richdale A, Clemons T, & Malow B. Sleep is associated with problem behaviors in children and adolescents with autism spectrum disorders. Res Autism Spectr Disord. 2011;5(3):1223-1229.

Kanne SM, Mazurek MO. Aggression in children and adolescents with ASD: Prevalence and risk factors. J Autism Dev Disord. 2011;41(7):926-937.

Perrin JM, Kolls JK, Coury DL. Evidence-based practice and health advocacy organizations. JAMA. 2011 Oct 5;306(13):1443; author reply 1444-5.

Perrin, JM. Children with special health care needs and changing policy. Acad Pediatr. 2011 Mar-Apr;11(2):103-4.

Coury D, Jones NE, Klatka K, Winklosky B, Perrin JM. Healthcare for children with autism: the Autism Treatment Network. Curr Opin Pediatr, 2009 Dec;21(6):828-32.

Kogan MD, Blumberg SJ, Schieve LA, Boyle CA, Perrin JM, Ghandour RM, et al. Prevalence of parent‐reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics. 2009 Nov;124(5):1395-403. Epub 2009 Oct 5.

Keywords

Autism, Nutrition & Diet, Sleep, Health Education & Family Support, Coordination of Services, Clinical Practice, Developmental Disabilities, Special Health Care Needs

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