Developmental-behavioral surveillance and screening
Early detection of children with developmental-behavioral delays and disabilities is essential to making sure that those with difficulties receive the benefits of early intervention. Background. Early intervention has been proven to help prevent school failure, reduce the need for expensive special education services, is associated with graduating from high school, avoiding teen pregnancy and violent crime, becoming employed when an adult, etc. Recent research from Head Start showed that for every $1 spent on early intervention, society as a whole saves $17.00. In the US, early intervention is guaranteed under the Individuals  with Disabilities Education Act (IDEA) beginning at birth. Because almost all children receive health care, primary care providers (e.g., nurses, family medicine physicians, and pediatricians) are charged by their various professional societies, by the Centers for Medicare and Medicaid Services, the Centers for Disease Control, and by IDEA to search for difficulties and make needed referrals. So what are the methods used to detect children with difficulties and how effective are they? Developmental-behavioral screening. Screening tools are brief measures designed to sort those who probably have problems from those who do not. Screens are meant to be used on  the asymptomatic and are not necessary when problems are obvious. Screens do not lead to a diagnosis but rather to a probability of a problem. The kind of problem that may exist is generally not defined by a screening test. The screens used in primary care are generally broad-band in nature, meaning that they tap a range of developmental domains, typically expressive and receptive language, fine and gross motor skills, self-help, social-emotional, and for older children pre-academic and academic skills. In contrast, narrow-band screens focus only on a single condition such mental health problems, and  may parse via factor scores, the probability, for example of depression and anxiety, versus attention deficits, versus disorders of conduct. Typically, broad-band screens are used first and may be the only type of measure used to make referrals in primary care, referrals which are then followed up by in—depth or diagnostic testing and often with narrow-band screens used alongside them. Screening measures require careful construction, research, and a high level of proof. High quality screens are ones that have been standardized (meaning administered in exactly the same way every time) on a large current (meaning in the  last decade) nationally representative sample. Screens must be shown to be reliable (meaning that two different examiners get virtually the same results, and that measuring the same child over a short period of time, e.g., two weeks, returns nearly the same result). Screens must have proven validity, meaning that they are given alongside lengthier measures and found to have a strong relationship (usually via correlations). Validity studies should also view which problems are detected (e.g., movement disorders, language impairment, autism spectrum disorder, learning disabilities). But the acid test of a quality screen, and what sets apart the psychometry of screens  from any other type of test, is proof of accuracy. This means that test developers must show proof of sensitivity, i.e., the percentage of children with problems detected, and specificity, meaning the percentage of children without problems who are identified usually with passing or negative test results. The standards for sensitivity and specificity are 70% to 80% at any single administration. While this may seem low, development is a moving target and repeated screening is needed to identify all in need. This also means that even quality screens make errors but, one study of four different screens showed that over -referrals (meaning children who fail screens but who are not found to be eligible for services upon more in-depth testing) are children with psychosocial risk factors and below average performance. This is helpful information for marshalling non-special education services, such as Head Start, after-school tutoring, Boys and Girls Clubs, parent training, etc. for a description of quality measures and links to publishers. Screens are expensive to produce, translate, support, etc. and so all developmental screens are copyrighted products that much be purchased from publishers. However, most are inexpensive to deliver with time and material costs between $ 1.00 - $4.00 per visit. Developmental-behavioral surveillance. Surveillance is the longitudinal process of getting “the big picture” of children's lives and intervening in potential problems preferably before they develop. Surveillance includes eliciting and addressing parents’ concerns, and monitoring and addressing psychosocial risk factors that may deter development (e.g., limited parental education, more than 3 children in the home, single parenting, poverty, parental depression or other mental health problems, problematic parenting style such as not talking much with children, reading to them, etc.). Surveillance involves the periodic use of broad-band developmental-behavioral screens but typically other kinds of  measures are also deployed (preferably with quality tools enjoying psychometric support). Surveillance measures include tools eliciting and addressing parents’ concerns, measures of psychosocial risk, parenting style, autism spectrum disorder, mental health, etc. Some available measures offer both surveillance and screening via longitudinal tracking forms for monitoring issues and progress. A combination of surveillance and screening is recommended by the American Academy of Pediatrics in their July 2006 policy statement. Efficacy. Studies on the effectiveness of early detection show that when quality screening tests are used routinely, early detection and early intervention enrollment rates rise to meet prevalence figures identified by  the Centers for Disease Control (e.g., see The National Library of Medicine for supporting studies and an example of an effective initiative conducted by The Center for Health Care Strategies). But, in the absence of quality measurement, only about 1/4 of eligible children ages 0 – 3 years of age are detected and enrolled in early intervention. So why are detection rates typically so low? Challenges to early detection in primary care. There are 8 major reasons why children with difficulties are not identified in primary care: Conclusion. The challenges of early detection in primary care are surmountable. But health care  providers need to be better engaged by the early childhood community, trained in the use of tools that are accurate and effective in primary care, and reimbursed appropriately for their time. A number of model initiatives demonstrate that challenges of early detection are not insurmountable. Early detection initiatives that have encouraged greater contact between early childhood programs and primary care providers have greatly increased the likelihood of referral (see www.dbpeds.org for information on programs such as First Signs, ABCD, Pride, etc.)