Children and adolescents with autism spectrum disorders (ASD) often experience symptoms associated with underlying medical conditions that may affect their health and wellbeing. Families face substantial difficulty accessing adequate health care particularly families from underserved groups. Purpose: To improve the physical health and well-being of children and adolescents with ASD or other developmental disabilities by expanding and continuing the work of the AIR-P. The network will advance HRSA's goal of addressing disparities and improving health equity by focusing on individuals from underserved populations across the U.S.
Goals and objectives:
AIR-P aims to: 1) conduct multisite research on evidence-based interventions that improve physical health of children and adolescents with ASD and developmental disorders especially underserved populations; 2) transform AIR-P into a multisite Learning Network (LN) which will provide a collaborative laboratory for developing and testing evidence-based interventions and accelerating the adoption of effective interventions to improve care and reduce disparities; 3) support development and mentorship of emerging or new investigators; 4) develop and disseminate guidelines for interventions; 5) accelerate the adoption of effective interventions into practice settings and communities especially underserved communities; and 6) leverage network capacity to compete for grant opportunities from other Federal and private sources. Proposed activities and target populations:
We will conduct two core multisite research initiatives: 1) ECHO Autism an intervention to teach PCPs to improve their care of children with ASD and 2) a study aimed at improving participation in dental care and oral health outcomes for underserved children with ASD. These projects target children with ASD with an emphasis on those from underserved groups including children from practices for which over 50% of patients are underserved (for ECHO Autism) and patients with Medicaid insurance (the Dental project). We will also provide opportunities to support secondary data analyses of ATN Registry data as well as pilot studies. We will transform AIR-P into a Learning Network that will include cycles of tests of change and spread of successful interventions to underserved communities complete guidelines and disseminate findings at a national level. Coordination:
The interdisciplinary team includes clinicians from diverse specialties health policy experts researchers and family members. Our partnership with the Massachusetts League of Community Health Centers (the League) will allow the AIR-P to coordinate the recruitment of patients pediatricians and practices to our research studies. We will also partner with community organizations that serve diverse communities.
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Perrin JM, Kolls JK, Coury DL. Evidence-based practice and health advocacy organizations. JAMA. 2011 Oct 5;306(13):1443;author reply 1444-1445. DOI:10.1001/jama.2011.1404 2011 21972304
Perrin, JM. Children with special health care needs and changing policy. Acad Pediatr. 2011;11(2):103-104. DOI:10.1016/j.acap.2010.08.010 2011 21296045
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;42(4):531-538. DOI:10.1007/s10803-011-1270-5 2012 21538171
Neumeyer AM, Gates A, Ferrone C, Lee H, Misra M. Bone density in peripubertal boys with autism spectrum disorders. J Autism Dev Disord. DOI:10.1007/s10803-012-1709-3 2012 23124396
Coury D. Very little high-quality evidence to support most medications for children with autism spectrum disorders. J Pediatr. 2011;159(5):872-873. DOI:10.1016/j.jpeds.2011.09.005 2011 21996118
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Hyman SL, Stewart PA, Schmidt B, et al. Nutrient intake from food in children with autism. Pediatrics. 2012;130(Suppl 2):S145-S153. DOI:10.1542/peds.2012-0900L 2012 23118245
Kanne SM, Mazurek MO. Aggression in children and adolescents with ASD: Prevalence and risk factors. J Autism Dev Disord. 2011;41(7):926-937. DOI:10.1007/s10803-010-1118-4 2011 20960041
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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-S138. DOI:10.1542/peds.2012-0900J 2012 23118243
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-S124. DOI:10.1542/peds.2012-0900I 2012 23118242
Mazurek MO, Vasa RA, Kalb LG, et al. Anxiety, sensory over-responsivity, and gastrointestinal problems in children with autism spectrum disorders. J Abnorm Child Psychol. 2013;41(1):165-176. DOI:10.1007/s10802-012-9668-x 2013 22850932
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-S58. DOI:10.1542/peds.2012-0900A 2012 23118253
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-S82. DOI:10.1542/peds.2012-0900E 2012 23118257
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-S201. DOI:10.1542/peds.2012-0900S 2012 23118252
Reynolds A, Krebs NF, Stewart PA, et al. Iron status in children with autism spectrum disorder. Pediatrics. 2012 Nov;130 Suppl 2:S154-S159. DOI:10.1542/peds.2012-0900M 2012 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-S90. DOI:10.1542/peds.2012-0900F 2012 23118258
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-S97. DOI:10.1542/peds.2012-0900G 2012 23118259
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Hamlin JC, Pauly M, Melnyk S, et al. 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 2013 24396597
Kaat AJ, Lecavalier L, Aman MG. Validity of the Aberrant Behavior Checklist in Children with Autism Spectrum Disorder. J Autism Dev Disord. DOI:10.1007/s10803-013-1970-0 2013 24165702
Kanne SM, Mazurek MO, Sikora D, et al. The Autism Impact Measure (AIM): Initial development of a new tool for treatment outcome measurement. J Autism Dev Disord. 2014;44(1):168-179. DOI:10.1007/s10803-013-1862-3 2014 23748386
Malow BA, Adkins KW, Reynolds A, et al. Parent-based sleep education for children with autism spectrum disorders. J Autism Dev Disord. 2014 ;44(1):216-228. DOI:10.1007/s10803-013-1866-z 2014 23754339
Peters B, Williams KC, Gorrindo P, et al. Rigid-compulsive behaviors are associated with mixed bowel symptoms in autism spectrum disorder. J Autism Dev Disord. 2014;44(6):1425-1432. DOI:10.1007/s10803-013-2009-2 2013 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. DOI:10.1016/j.rasd.2012.09.006 2013
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. DOI:10.1016/j.rasd.2012.11.004 2013
Hill AP, Zuckerman KE, Hagen AD, et al. Aggressive behavior problems in children with autism spectrum disorders: prevalence and correlates in large clinical sample. Res Autism Spectr Disord. 2014;8(9):1121-1133. DOI:10.1016/j.rasd.2014.05.006 2014 25221619
Hoefman R, Payakachat N, van Exel J, et al. Caring for a child with autism spectrum disorder and parents� quality of life: application of the CarerQol. J Autism Dev Disord. 2014;44(8):1933-1945. DOI:10.1007/s10803-014-2066-1 2014 24577786
Johnson CR, Turner K, Stewart PA, et al. Relationship between feeding problems, behavioral characteristics, and nutritional quality in children with ASD. J Autism Dev Disord. 2014;44(9):2175-2184. DOI:10.1007/s10803-014-2095-9 2014
Mazurek MO, Keefer A, Shui A, Vasa RA. One-year course and predictors of abdominal pain in children with autism spectrum disorders: the role of anxiety and sensory over-responsivity. Res Autism Spect Dis. 2014;8(11):1508-1515. DOI:10.1016/j.rasd.2014.07.018 2014
Payakachat N, Tilford JM, Kuhlthau KA, et al. Predicting health utilities for children with autism spectrum disorders. Autism Res. 2014;7(6):649-663. DOI:10.1002/aur.1409 2014 25255789
Vasa RA, Carroll LM, Nozzolillo AA, et al. A systematic review of treatments for anxiety in youth with autism spectrum disorders. J Autism Dev Disord. 2014;44(12):3215-3229. DOI:10.1007/s10803-014-2184-9 2014 25070468
Zuckerman KE, Hill AP, Guion K, Voltolina L. Overweight and obesity: prevalence and correlates in a large clinical sample of children with autism spectrum disorder. J Autism Dev Disord. 2014;44(7):1708-1719. DOI:10.1007/s10803-014-2050-9 2014 24488158
DeMand A, Johnson C, Foldes E. Psychometric properties of the Brief Autism Mealtime Behaviors Inventory. J Autism Dev Disord. 2015;45(9):2667-2673. DOI:10.1007/s10803-015-2435-4 2015 25813517
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Mazurek MO, Petroski GF. Sleep problems in children with autism spectrum disorder: examining the contributions of sensory over-responsivity and anxiety. Sleep Med. 2015;16(2):270-279. DOI:10.1016/j.sleep.2014.11.006 2015 25600781
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Kogan MD, Blumberg SJ, Schieve LA, et al. Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics. 2009 Nov;124(5):1395-1403. DOI:10.1542/peds.2009-1522 2009 19805460
Coury D. Medical treatment of autism spectrum disorders. Curr Opin Neurol. 2010;23(2):131-136. DOI:10.1097/WCO.0b013e32833722fa 2010 20087181
Kuhlthau K, Orlich F, Hall TA, et al. Health-Related Quality of Life in children with autism spectrum disorders: results from the autism treatment network. J Autism Dev Disord. 2010 Jun;40(6):721-729. DOI:10.1007/s10803-009-0921-2 2010 20033762
Perrin JM. Children with special health care needs and changing policy. Acad Pediatr. 2011;11(2):103-104. DOI:10.1016/j.acap.2010.08.010 2011 21296045
Coury D. Very little high-quality evidence to support most medications for children with autism spectrum disorders. J Pediatr. 2011 Nov;159(5):872-873. DOI:10.1016/j.jpeds.2011.09.005 2011 21996118
Perrin JM, Kolls JK, Coury DL. Evidence-based practice and health advocacy organizations. JAMA. 2011 Oct 5;306(13):1443; author reply 1444-1445. DOI:10.1001/jama.2011.1404 2011 21972304
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;42(4):531-538. DOI:10.1007/s10803-011-1270-5 2011 21538171
Kanne SM, Mazurek MO. Aggression in children and adolescents with ASD: prevalence and risk factors. J Autism Dev Disord. 2011 Jul;41(7):926-937. DOI:10.1007/s10803-010-1118-4 2011 20960041
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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 Nov;130 Suppl 2:S62-S68. DOI:10.1542/peds.2012-0900C 2012 23118255
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 Nov;130 Suppl 2:S77-S82. DOI:10.1542/peds.2012-0900E 2012 23118257
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 Nov;130 Suppl 2:S91-S97. DOI:10.1542/peds.2012-0900G 2012 23118259
Furuta GT, Williams K, Kooros K, et al. Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov;130 Suppl 2:S98-S105. DOI:10.1542/peds.2012-0900H 2012 23118260
Malow BA, Byars K, Johnson K, et al. Sleep Committee of the Autism Treatment Network. A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov;130 Suppl 2:S106-S124. DOI:10.1542/peds.2012-0900I 2012 23118242
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-S138. DOI:10.1542/peds.2012-0900J 2012 23118243
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-S144. DOI:10.1542/peds.2012-0900K 2012 23118244
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-S90. DOI:10.1542/peds.2012-0900F 2012 23118258
Hyman SL, Stewart PA, Schmidt B, et al. Nutrient intake from food in children with autism. Pediatrics. 2012;130 Suppl 2:S145-S153. DOI:10.1542/peds.2012-0900L 2012 23118245
Reynolds A, Krebs NF, Stewart PA, et al. Iron status in children with autism spectrum disorder. Pediatrics. 2012;130 Suppl 2:S154-S159. DOI:10.1542/peds.2012-0900M 2012 23118246
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Landa RJ, Kalb LG. Long-term outcomes of toddlers with autism spectrum disorders exposed to short-term intervention. Pediatrics. 2012;130 Suppl2:S186-S190. DOI: 10.1542/peds.2012-0900Q 2012 23118250
Lin SC, Yu SM, Harwood RL. Autism spectrum disorders and developmental disabilities in children from immigrant families in the United States. Pediatrics. 2012 Nov;130 Suppl 2:S191-S197. DOI:10.1542/peds.2012-0900R 2012 23118251
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-S201. DOI:10.1542/peds.2012-0900S 2012 23118252
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; 1;30(8):661-679. DOI:10.2165/11597200-000000000-00000 2012 22788258
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-S58. DOI:10.1542/peds.2012-0900A 2012 23118253
Mazurek MO, Vasa RA, Kalb LG, et al. Anxiety, sensory over-responsivity, and gastrointestinal
problems in children with autism spectrum disorders. J Abnorm Child Psychol. 2013;41(1):165-176. DOI:10.1007/s10802-012-9668-x 2013 22850932
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. DOI:10.1016/j.rasd.2012.11.004 2013
Coury, DL. DSM-5 and Autism Spectrum Disorders: Implications for Families and Clinicians. J Dev Behav Pediatr. 2013;34(7):494-496. DOI:10.1097/DBP.0b013e31829cac3e 2013 24042080
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; 7:307-315. DOI:10.1016/j.rasd.2012.09.006 2013
Neumeyer AM, Gates A, Ferrone C, Lee H, Misra M. Bone density in peripubertal boys with autism spectrum disorders. J Autism Dev Disord. 2013;43(7):1623-9. DOI:10.1007/s10803-012-1709-3 2013 23124396
Kanne SM, Mazurek MO, Sikora D, et al. The Autism Impact Measure (AIM): initial development of a new tool for treatment outcome measurement. J Autism Dev Disord. 2014;44(1):168-179. DOI:10.1007/s10803-013-1862-3 2014 23748386
Kuhlthau K, Orlich F, Hall TA, et al. Health-Related Quality of Life in children with autism spectrum disorders:
results from the autism treatment network. J Autism Dev Disord. 2010 Jun;40(6):721-729. DOI:10.1007/s10803-009-0921-2 2013 20033762
Malow BA, Adkins KW, Reynolds A, et al. Parent-based sleep education for children with autism spectrum disorders. J Autism Dev Disord. 2014;44(1):216-228. DOI: 10.1007/s10803-013-1866-z 2014 23754339
Vasa RA, Kalb L, Mazurek M, et al. Age-related differences in the prevalence and correlates of anxiety in youth with autism spectrum disorders. Research in Autism Spectrum Disorders. 2013;7(11):1358-1369. DOI:10.1016/j.rasd.2013.07.005 2013
Kaat AJ, Lecavalier L, Aman MG. Validity of the aberrant behavior checklist in children with autism spectrum disorder. J Autism Dev Disord. 2014 May;44(5):1103-1116. DOI:10.1007/s10803-013-1970-0 2013 24165702
Fawkes DB, Malow BA, Weiss SK,et al. Conducting actigraphy research in children with neurodevelopmental disorders--a practical approach. Behav Sleep Med. 2015;13(3):181-196. DOI:10.1080/15402002.2013.854245 2013 24669845
Hamlin JC, Pauly M, Melnyk S, et al. 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 2013 24396597
Kuhlthau KA, Warfield ME, Hurson J, Delahaye J, Crossman MK. Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: current strategies and promising new directions. Autism. 2015;19(3):262-71. DOI:10.1177/1362361313518125 2014 24497626
Coury DL, Swedo SE, Thurm AE, et al. Treating the whole person with autism: the proceedings of the
Autism Speaks National Autism Conference. Curr Probl Pediatr Adolesc Health Care. 2014;44(2):26-47. DOI:10.1016/j.cppeds.2013.12.002 2014 24491508
Broder-Fingert S, Shui A, Pulcini CD, Kurowski D, Perrin JM. Racial and ethnic differences in subspecialty service use by children with autism. Pediatrics. 2013;132(1):94-100. Erratum in: Pediatrics. 2013;132(4):780. DOI:10.1542/peds.2012-3886 2013 23776121
Peters B, Williams KC, Gorrindo P, et al. Rigid-compulsive behaviors associated with mixed bowel symptoms in Autism Spectrum Disorder. J Autism Dev Disord. 2014;44(6):1425-32. DOI:10.1007/s10803-013-2009-2 2013 24293040
Zuckerman KE, Hill AP, Guion K, Voltolina L, Fombonne E. Overweight and obesity: prevalence and correlates in a large clinical sample of children with autism spectrum disorder. J Autism Dev Disord. 2014;44(7):1708-1719. DOI:10.1007/s10803-014-2050-9 2014 24488158
Hoefman R, Payakachat N, van Exel J, et al. Caring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol. J Autism Dev Disord. 2014;44(8):1933-45. DOI:10.1007/s10803-014-2066-1 2014 24577786
Goldman SE, McGrew S, Johnson KP, Richdale AL, Clemons T, Malow BA9. Sleep is associated with problem behaviors in children and adolescents with Autism Spectrum Disorders. Res Autism Spectr Disord. 2011;5(3):1223-1229. DOI:10.1016/j.rasd.2011.01.010 2011
Coury D, Jones NE, Klatka K, Winklosky B, Perrin JM. Healthcare for children with autism: the Autism Treatment Network. Curr Opin Pediatr; 2009;21(6):828-832. DOI:10.1097/MOP.0b013e328331eaaa 2009
Hill AP, Zuckerman KE, Hagen AD, et al. Agressive behavior problems in children with Autism Spectrum Disorders: prevalence and correlates in a large clinical sample. Res Autism Spectr Disord. 2014;1;8(9):1121-1133. DOI:10.1016/j.rasd.2014.05.006 2014 25221619
Johnson CR, Turner K, Stewart PA, et al. Relationship between problems, behavioral characteristics, and nutritional quality in children with ASD. J Autism Dev Disord. 2014;44(9):2175-84. DOI:10.1007/s10803-014-2095-9 2014 24664635
Vasa RA, Carroll LM, Nozzolillo AA, et al. A systematic review of treatments for anxiety in youth with Autism Spectrum Disorders. J Autism Dev Disord. 2014;44(12):3215-3229. DOI:10.1007/s1080014-2184-9 2014 25070468
Mazurek MO, Keefer A, Shui A, Vasa RA. One-year course and predictors of abdominal pain in children with autism spectrum disorders: The role of anxiety and sensory over-responsivity. Research in Autism Spectrum Disorders. 2014;8(11):1508-15. DOI:10.1016/j.rasd.2014.07.018 2014
Mazurek MO, Handen BL, Wodka EL, Nowinski L, Butter E, Engelhardt CR. Age at first autism spectrum disorder diagnosis: the role of birth cohort, demographic factors, and clinical features. J Dev Behav Pediatr. 2014;35(9):561-569. DOI:10.1097/DBP.0000000000000097 2014 25211371
Payakachat N, Tilford JM, Kuhlthau KA, et al. Predicting health utilities for children with autism spectrum disorders. Autism Res. 2014;7(6):649-663.. DOI:10.1002/aur.1409 2014 25255789
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