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Update on new developmental screening systems for special populations
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New initiatives have recently been published aimed at earlier identification and treatment of children with developmental disabilities and related behavior disorders, expanding this practice beyond the general pediatric guidelines of 2006.
It is currently estimated that 5% of children, or 3.5 million, have special health care needs affecting their development and behavior, based upon recent data from the National Center for Health Statistics. Conditions include intellectual disabilities; autism spectrum disorders; cerebral palsy; muscular dystrophy; and the less severe attention-deficit/hyperactivity, anxiety, mood and disruptive behavior disorders. The 2006 AAP guidelines for developmental surveillance and screening have provided a structured process for identifying affected children during well-child visits at ages 9, 18 and 30 months. However, newer initiatives have emerged targeting disorders or special populations outside the focus of the prior algorithm that merit similar attention from the general pediatric community.
New AHA algorithm
A new model aimed at identifying these disorders in children with congenital heart disease (CHD) serves as a model for developmental surveillance and screening in pediatric high-risk populations. With the improved survival of young children with CHD, many of them have been recognized as having later special neurodevelopmental, educational, and social and behavioral needs requiring medical and therapy treatments for optimal long-term development and quality of life.
A cardiology and neurodevelopmental expert panel convened by the American Heart Association has developed a new structured algorithm, modeled after the earlier AAP guidelines for the general population, but which includes new techniques for those children at highest risk. The panel is recommending a two-tiered approach for monitoring children with CHD, with differing methods of screening and evaluation for those at high risk and those with low risk. Those at low risk are to be followed by the primary care physician in the usual manner, with periodic standardized developmental screening at the usual recommended ages noted above.
Paul H. Lipkin
However, for those at higher risk, such as children requiring open heart surgery during the neonatal period or those with cyanotic lesions, a more detailed and frequent series of in-depth neurodevelopmental evaluations is recommended, along with immediate referral for early intervention services and genetic and neurologic evaluations. These developmental evaluations contrast with the screening recommended in the low-risk group and the general population, with direct testing of the child with standardized developmental or psychological tests aimed at definitively identifying specific neurodevelopmental or behavioral conditions. This schema of stratified evaluation techniques, based on distinguishing those at low risk and those at high risk, serves as a potential model for other high-risk medical conditions associated with long-term neurodevelopmental disorders, such as premature birth, intrauterine alcohol exposure, central nervous system infections and congenital renal disorders.
Screening for motor disabilities
Another new developmental screening initiative is targeting children with neuromotor disorders. Although current screening instruments have been best validated for identification of language, learning and behavior disorders, little data exists on their use in children with known motor disabilities such as cerebral palsy or muscular dystrophy. In contrast, research has demonstrated 2- to 3-year lags in the identification and initiation of treatment in children with Duchenne muscular dystrophy.
With new treatment modalities, such as long-term corticosteroids and cardiorespiratory support, these children have longer periods of walking and improved survival. This has come to the attention of policymakers, in part through the efforts of parents of affected children, resulting in a CDC-supported AAP initiative aimed at earlier identification of the children through developmental screening techniques specific to such disorders. As a result, it is now recommended that all children be screened at the usual ages of 9, 18 and 30 months with a standardized instrument.
However, when a motor concern is identified, the primary care clinician should be performing a detailed neurologic examination. If the examination demonstrates normal or low tone, a child should have low-cost testing for creatine kinase and thyroid functioning to rule out the treatable muscular dystrophies and thyroid disorders. When a child has increased tone, the diagnosis of cerebral palsy should be considered, with referral for neuroimaging or further medical consultation by an appropriate neurodevelopmental specialist. In all such circumstances, referral for early intervention evaluation also is suggested for possible initiation of therapy services.
We have now reached a point in child health in which the importance of early identification and treatment of the children with neurodevelopmental and behavioral disorders is well accepted as a key feature of the patient-centered medical home. Since the creation of new models of pediatric office-based surveillance and screening, we have seen a doubling of the practice, with its increasing incorporation into routine well-child care.
Improved long-term health
Although greater numbers of children are being screened in their pediatric home, more than half still are not. We also are only beginning to understand the best techniques for identifying autism, hearing impairments, motor disorders and other developmental disabilities in the general population and recognizing these conditions in children with other serious chronic medical conditions. With the improved adoption of these techniques and the investigation of their effectiveness, it is hoped that we will be able to provide critical treatments and therapies to affected children at the earliest ages and improve their long-term health and well-being.
References:
Council on Children With Disabilities. Pediatrics. 2006;118:405-420.
For more information:
Paul H. Lipkin, MD, is associate professor of pediatrics and director of the Center for Development and Learning at Kennedy Krieger Institute/Johns Hopkins University School of Medicine. He also is a member of the Infectious Diseases in Children Editorial Board. Lipkin can be reached at lipkin@kennedykrieger.org.
Disclosure: Lipkin reports no relevant financial disclosures.