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.

Kim Van Naarden Braun, Sydney D Pettygrove, Julie Daniels, Lisa Miller, Joyce Nicholas, Jon Baio, Laura Schieve, Russell S. Kirby, Anita Washington, Sally Brocksen, Hossein Rahbar, Catherine Rice

Research output: Contribution to journalArticle

86 Citations (Scopus)

Abstract

PROBLEM: Autism spectrum disorders (ASDs) encompass a spectrum of conditions, including autistic disorder; pervasive developmental disorders, not otherwise specified (PDD-NOS); and Asperger disorder. Impairments associated with ASDs can range from mild to severe. In 2000, in response to increasing public heath concern regarding ASDs, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network. The primary objective of this ongoing surveillance system is to track the prevalence and characteristics of ASDs in the United States. ADDM data are useful to understand the prevalence of ASDs and have implications for improved identification, health and education service planning, and intervention for children with ASDs. Because complete, valid, timely, and representative prevalence estimates are essential to inform public health responses to ASDs, evaluating the effectiveness and efficiency of the ADDM methodology is needed to determine how well these methods meet the network's objective. REPORTING PERIOD: 2002. DESCRIPTION OF SYSTEM: The ADDM Network is a multiple-source, population-based, active system for monitoring ASDs and other developmental disabilities. In 2002, data were collected from 14 collaborative sites. This report describes an evaluation conducted using guidelines established by CDC for evaluating public health surveillance systems and is based on examination of the following characteristics of the ADDM Network surveillance system: simplicity, flexibility, data quality, acceptability, representativeness, sensitivity, predictive value positive (PVP), timeliness, stability, data confidentiality and security, and sources of variability. RESULTS AND INTERPRETATION: Using multiple sources for case ascertainment strengthens the system's representativeness, sensitivity, and flexibility, and the clinician review process aims to bolster PVP. Sensitivity and PVP are difficult to measure, but the ADDM methodology provides the best possible estimate currently available of prevalence of ASDs without conducting complete population screening and diagnostic clinical case confirmation. Although the system is dependent on the quality and availability of information in evaluation records, extensive quality control and data cleaning protocols and missing records assessments ensure the most accurate reflection of the records reviewed. Maintaining timeliness remains a challenge with this complex methodology, and continuous effort is needed to improve timeliness and simplicity without sacrificing data quality. The most difficult influences to assess are the effects of changes in diagnostic and treatment practices, service provision, and community awareness. Information sharing through education and outreach with site-specific stakeholders is the best mechanism for understanding the current climate in the community with respect to changes in service provision and public policy related to ASDs, which can affect prevalence estimates. PUBLIC HEALTH ACTIONS: These evaluation results and descriptions can be used to help interpret the ADDM Network 2002 surveillance year data and can serve as a model for other public health surveillance systems, especially those designed to monitor the prevalence of complex disorders.

Original languageEnglish (US)
Pages (from-to)29-40
Number of pages12
JournalMMWR. Surveillance summaries : Morbidity and mortality weekly report. Surveillance summaries / CDC
Volume56
Issue number1
StatePublished - Feb 9 2007
Externally publishedYes

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Developmental Disabilities
Autistic Disorder
autism
surveillance
disability
monitoring
methodology
evaluation
Public Health Surveillance
Centers for Disease Control and Prevention (U.S.)
Autism Spectrum Disorder
Asperger Syndrome
public health
Computer Security
data quality
Information Dissemination
Information Storage and Retrieval
Confidentiality
Public Policy
Climate

ASJC Scopus subject areas

  • Medicine(all)

Cite this

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. / Van Naarden Braun, Kim; Pettygrove, Sydney D; Daniels, Julie; Miller, Lisa; Nicholas, Joyce; Baio, Jon; Schieve, Laura; Kirby, Russell S.; Washington, Anita; Brocksen, Sally; Rahbar, Hossein; Rice, Catherine.

In: MMWR. Surveillance summaries : Morbidity and mortality weekly report. Surveillance summaries / CDC, Vol. 56, No. 1, 09.02.2007, p. 29-40.

Research output: Contribution to journalArticle

Van Naarden Braun, Kim ; Pettygrove, Sydney D ; Daniels, Julie ; Miller, Lisa ; Nicholas, Joyce ; Baio, Jon ; Schieve, Laura ; Kirby, Russell S. ; Washington, Anita ; Brocksen, Sally ; Rahbar, Hossein ; Rice, Catherine. / 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. In: MMWR. Surveillance summaries : Morbidity and mortality weekly report. Surveillance summaries / CDC. 2007 ; Vol. 56, No. 1. pp. 29-40.
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