View article

Objective

To compare prevalence estimates obtained by the ADDM cerebral palsy surveillance method to other administrative or diagnostic indications of cerebral palsy.

Introduction

Cerebral Palsy (CP) is the most common cause of motor disability in children. CP registries often rely on administrative data such as CP diagnoses or International Classification of Diseases (ICD) codes indicative of CP. However, little is known about the validity of these indicators. We calculated sensitivity, specificity, positive and negative predictive values of CP ICD-9 codes and CP diagnoses compared to a “gold standard” CP classification based on detailed medical and education record review.

Methods

This sample includes 50,332 8-year-olds living in four US sites (32 counties in Alabama, 5 counties in Georgia, 10 counties in Wisconsin, and 5 counties in Missouri) in 2006, 2008, and 2010. The Autism and Developmental Disabilities Monitoring (ADDM) Network reviewed medical and education records for these children as part of the US Centers for Disease Control and Prevention population-based surveillance of developmental disabilities. All of these children received special education services or were assigned one or more ICD-9 codes associated with a variety of developmental disabilities by community medical providers. Medical and education records were reviewed by trained staff; if the records contained CP diagnoses or motor findings indicative of CP, detailed clinical information was abstracted for additional review by trained clinicians who determined whether the child met the CP case definition based on all information …