The Impact of Surveillance Method and Record Source on Autism Prevalence: Collaboration with Utah Maternal and Child Health Programs
Rent the article at a discountRent now
* Final gross prices may vary according to local VAT.Get Access
With the increasing number of Utah children identified with autism spectrum disorders (ASDs), information on the prevalence and characteristics of these children could help Maternal Child Health (MCH) programs develop population building activities focused on prevention, screening, and education. The purpose of this study is to describe Utah’s autism registry developed in collaboration with state MCH programs and assess the impact of different record-based surveillance methods on state ASD prevalence rates. The study was conducted using 212 ASD cases identified from a population of 26,217 eight year olds living in one of the three most populous counties in Utah (Davis, Salt Lake, and Utah) in 2002. ASD prevalence was determined using two records based approaches (administrative diagnoses versus abstraction and clinician review) by source of record ascertainment (education, health, and combined). ASD prevalence ranged from 7.5 per 1000 (95% CI 6.4–8.5) to 3.2 per 1000 (95% CI 2.5–3.9) varying significantly (P < .05) based on method and record source. The ratio of male-to-female ranged from 4.7:1 to 6.4:1. No significant differences were found between the two case ascertainment methods on 18 of the 23 case characteristics including median household income, parental education, and mean age of diagnosis. Broad support is needed from both education and health sources as well as collaboration with MCH programs to address the growing health concerns, monitoring, and treatment needs of children and their families impacted by autism spectrum disorders.
- Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators. (2007). Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, 14 Sites, United States, 2002. MMWR, 56(SS-1), 12–28.
- Ritvo, ET, Freeman, BJ, Pingree, C (1989) The UCLA-University of Utah epidemiologic survey of autism prevalence. The American Journal of Psychiatry 146: pp. 194-199
- Fombonne, E Past and future perspectives in autism epidemiology. In: Molden, SO, Rubenstein, JLR eds. (2006) Understanding autism. Taylor and Francis Group, Baca Raton, FL, pp. 25-48
- Blaxhill, MF (2004) What’s going on? The question of time trends in autism. Public Health Reports 119: pp. 536-551 CrossRef
- Wazana, A, Bresnahan, M, Kline, J (2007) The autism epidemic: Fact or artifact?. Journal of the American Academy of Child and Adolescent Psychiatry 46: pp. 721-730 CrossRef
- Shattuck, PT (2006) The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education. Pediatrics 117: pp. 1028-1037 CrossRef
- Newschaffer, CJ, Croen, LA, Daniels, J, Giarelli, E, Grether, JK (2007) The epidemiology of autism spectrum disorders. Annual Review of Public Health 28: pp. 235-258 CrossRef
- Pinborough-Zimmerman, J., & McMahon, W. (2008). Autism: An urgent public health and education concern. The Utah Special Educator, Monograph Edition, 28(3)8–9.
- Kogan, MD, Strickland, BB, Blumberg, SJ, Singh, GK, Perrin, JM, Dyck, PC (2008) A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics 112: pp. e1149-e1158 CrossRef
- Mandell, DS, Cao, J, Ittenbach, R, Pinto-Martin, J (2006) Medicaid expenditures for children with autistic spectrum disorders: 1994 to 1999. Journal of Autism and Developmental Disorders 36: pp. 475-485 CrossRef
- Utah Registry of Autism and Developmental Disabilities. http://health.utah.gov/autism. Accessed on April 6, 2009.
- U.S. Department of Health and Human Services. (2007). Maternal and child health services title V block grant program: Guidance and forms for the title V application/annual report fourth edition. Rockville, MD: Maternal and Child Health Bureau, pp. 5–31.
- Croen, LA, Grether, JK, Hoogstrate, J, Selvin, S (2002) The changing prevalence of autism in California. Journal of Autism and Developmental Disorders 32: pp. 207-215 CrossRef
- Mind Institute 2002 M.I.N.D. The epidemiology of autism in California. Report to the legislature on the principal findings from the epidemiology of autism in California: A comprehensive pilot study. http://www.mindfully.org/Health/2002/Autism-In-California-MIND17oct02.htm. Accessed on January 08, 2009.
- Newscaffer, CJ, Falb, MD, Gurney, JG (2005) National autism prevalence trends from the United States special education data. Pediatrics 115: pp. e277-e282 CrossRef
- Rice, C, Baio, J, Naarden Braun, K, Doernberg, N, Meaney, FJ, Kirby, RS (2007) Determining the prevalence of the autism spectrum disorders (ASDs) in the United States: Methodology used by the CDC-funded ADDM. Paediatric and Perinatal Epidemiology 21: pp. 179-190 CrossRef
- Van Naarden Braun, K., Pettygrove, S., Daniels, J., et al. (2007). Evaluation of a methodology for a collaborative multiple source surveillance network for autism spectrum disorders—autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR, 29–40.
- Yeargin-Allsop, M, Rice, C, Karapurkar, T, Doernberg, N, Boyle, C, Murphy, C (2003) Prevalence of autism in a US metropolitan area. Journal of the American Medical Association 289: pp. 49-55 CrossRef
- Laidler, JR (2005) US department of education data on “autism” are not reliable for tracking autism prevalence. Pediatrics 16: pp. e120-e124 CrossRef
- Utah Code––Title 26––Utah Health Code. http://www.le.state.ut.us/~code/TITLE26/TITLE26.htm. Accessed on March 6, 2008.
- International Classification of Diseases. (1988). Clinical modification (9th Rev.). Washington, DC: Public Health Service, US Dept of Health and Human Services.
- United States Department of Education. http://idea.ed.gov/explore/view/p/,root,regs,300,A,300%252E8,c. Accessed on April 6, 2009.
- Governor’s Office of Planning and Budget, Utah Population Estimates Committee. http://www.governor.utah.gov/dea/UPEC.html. Accessed on April 6, 2009.
- Pinborough-Zimmerman, J, Satterfield, R, Miller, J, Bilder, D, Hossain, S, McMahon, W (2007) Communication disorders: Prevalence and comorbid intellectual disability, autism and emotional/behavioral disorders. American Journal of Speech-Language Pathology 16: pp. 359-367 CrossRef
- Utah Birth Defect Network. http://hlunix.hl.state.ut.us/birthdefect. Accessed on October 7, 2008.
- Utah Department of Health’s Baby Watch Early Intervention Program. http://www.utahbabywatch.org. Accessed on October 7, 2008.
- Utah Department of Health’s Child Health Advanced Records Management Program. http://charm.health.utah.gov. Accessed on October 7, 2008.
- Utah Department of Health’s Center for Health Data IBIS-PH. http://ibis.health.utah.gov. Accessed on October 7, 2008.
- Bilder, D., Pinborough-Zimmerman, J., Miller, J., & McMahon, W. (2009). Prenatal, perinatal and neonatal factors associated with autism spectrum disorders. Pediatrics, in press.
- U.S. Department of Health and Human Services, Maternal and Child Health Bureau. Maternal child health bureau programs: Children with special health care needs MCHB objective. http://mchb.hrsa.gov/programs/default.htm. Accessed on April 6, 2009.
- The Impact of Surveillance Method and Record Source on Autism Prevalence: Collaboration with Utah Maternal and Child Health Programs
Maternal and Child Health Journal
Volume 14, Issue 3 , pp 392-400
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Autism spectrum disorders
- Maternal child health
- Industry Sectors