Use of the Children with Special Health Care Needs Screener to identity children with disabilities

Objective: A screening instrument to identify children with disabilities would benefit the public health research community. Our objective was to determine the sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) of the CSHCN Screener for Children with Special Health Care Needs (CSHCN) for identifying children with disabilities. Methods: Using the Screener, respondents, usually parents, identified children who have limitations in their ability to do the things most children of the same age can do. To test the sensitivity, specificity, PPV and NPV of the Screener, we utilized the Survey questions addressing difficulties with mobility/coordination, self-care, fine motor skills, learning, communicating, vision or hearing despite correction, as markers of disability. Results: Disabilities were identified in 49.3% of CSHCN. Cognitive disabilities were identified in 43% of CSHCN, while physical disabilities were identified in 23%. Only 21% of respondents identified their child as disabled on the Screener. 36% of respondents with a child who had disabilities identified their child as disabled on the Screener (sensitivity), whereas 92% of children without a disability were identified as such (specificity). Only 82% of children identified as "cases" by the Screener had disabilities (PPV), and only 60% of those identified as "controls" were free of disabilities (NPV). Conclusions: Using the Screener to estimate the prevalence of disability in childhood will lead to low estimates of disability prevalence that could have significant policy implications. Researchers utilizing the CSHCN Screener should consider using other measures of disability available in national datasets when studying children with disabilities.