Early Detection of Developmental and Behavioral Problems

After completing this article, readers should be able to: Approximately 15% to 18% of children in the United States have developmental or behavioral disabilities. An additional 7% to 10% experience substantive school failure and drop out before completing high school. Overall, one in four children has serious psychosocial problems. To ensure that these children are detected early and their difficulties addressed, the American Academy of Pediatrics’ Committee on Children with Disabilities recommends that pediatricians use validated screening tools at each health supervision visit. Many pediatricians find it difficult to comply with this recommendation because of minimal reimbursement, young patients’ limited compliance with requests to stack blocks or answer questions, time constraints, and concerns about the accuracy and length of well-known screening tools. Finally, children who are at environmental risk for developmental delays and subsequent school failure due to poverty, limited parental education, and similar risk factors do not always receive health supervision visits. Accordingly, they are unavailable at times when pediatricians typically are most vigilant in their search for developmental problems. Most physicians depend on clinical judgment rather than screening tools. Unfortunately, research shows that clinical judgment detects fewer than 30% of children who have mental retardation, learning disabilities, language impairments, and other developmental disabilities. Clinical judgment also identifies fewer than 50% of children who have serious emotional and behavioral disturbances. Use of improved classification systems, such as the Primary Care version of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-PC), may lead to higher identification rates, although research on this possibility is needed. Why is the identification of psychosocial problems so poor? One culprit may be the developmental checklists typically embedded in pediatric encounter forms. Although these contain different tasks for patients of different ages, checklists are neither validated nor standardized. None provides proof that specific items measure important skills, and none has scoring criteria that enable clinicians to determine how many failed items is too many. Should the child who misses one out of the typically four or five tasks listed (eg, puts two words together, stands on one foot for 10 seconds) be referred? Two of five? Three of five? No one knows. Physicians never would use such haphazard and unproven methods for screening blood lead levels, thalassemia, or hypothyroidism. Why do we accept less for development and behavior? Even when screening tests are used, many clinicians administer them only after noticing a problem, rather than using them with asymptomatic patients, as recommended. Other contributions to limited detection include nonstandardized applications of standardized measures, such as administration of only selected items on the Denver Developmental Screening Test-II. These violations to test validity also may leave professionals without clear information on children’s developmental and behavioral status. The nature of developmental problems adds to the challenges of early detection. Young children’s symptoms are often subtle and difficult to discriminate from normal development. For example, most children who have disabilities talk, but they may not talk well. They usually read, but may not read well. Similarly, a child who has serious attentional or behavioral problems may be obedient and focused during a brief office visit. Few children who have disabilities are dysmorphic or show other symptoms likely to be apparent on physical examination. Development is also a “moving target. ” Developmental disabilities develop just as normal development does. It is impossible to determine that a 12-month-old child has a language impairment until vocabulary or word combinations fail to emerge or emerge only in an attenuated state. Learning disabilities and attention deficit disorder rarely are detected until 4 to 7 years of age, when children initially are exposed to reading instruction and other structured academic tasks. Not apparent until 2 to 3 years of age is the adverse impact of environmental risk factors, including single parenthood, less than a high school education for the parent, limited social support, parental mental health problems (eg, depression), poverty, frequent life events (eg, household moves), more than three children in the home, an authoritarian parenting style in which children are the recipients of abundant commands but little conversation, and minority status. Early intervention is effective because development is malleable and readily affected by the environment. In large part, early intervention works by systematically removing external risk factors. Early intervention programs place children in developmentally enriching settings, train parents in responsiveness and effectiveness, and provide continuous positive redirection and focused building of skills. Two years of intervention prior to kindergarten produces substantial economic, academic, and social benefits and saves society between 30, 000 and 100, 000 per child (see Meisels and Shonkoff in Suggested Reading for additional information). Children receiving early intervention are more likely to complete high school, maintain jobs, live independently, and avoid teen pregnancy and criminality. Recognizing these positive outcomes, Congress enacted the Individuals with Disabilities Education Act, which ensures the national availability of early intervention and public school special education for children up to age 22 who either have disabilities or have a high degree of biologic risk. Children at environmental risk typically are not eligible for these programs, but they are served by other federally funded services, such as Chapter I, Head Start, and other developmental stimulation programs. The benefits of early intervention clearly depend on early detection, which requires that clinicians know how to identify accurately patients who have disabilities. Because time and reimbursement are limited, clinicians also should know how to identify patients quickly. Fortunately, a number of recently published measures offer both accuracy and brevity. Hundreds of assessment measures are on the market in the United States, and their publication is an unregulated industry in which no governmental agencies or scholarly societies prevent tests of poor quality from being advertised and sold. Accordingly, clinicians must be familiar with standards for screening measures so they can select tools that have appropriate levels of accuracy. Such tests bear the burden of proof that the majority of children who do or do not have problems will be identified correctly. Because of the malleability and age-related manifestations of development, standards for developmental/behavioral screening tests are somewhat lower than is accepted for medical screens. Even so, good developmental/behavioral tools have sensitivity to psychosocial problems of 70% to 80% and specificity to normal development of 70% to 80%. Although 20% to 30% of children will be over-referred, false-positive identifications often are children whose intellectual, language, or academic skills are below average. These children may not qualify for special education, but they still need unique care from clinicians (eg, their parents will benefit from suggestions for developmental promotion and children will benefit from Head Start or other developmental stimulation programs, summer school, tutoring, and vigilant clinical monitoring to detect emerging disabilities). The 20% to 30% of children who have disabilities and are not detected by the single administration of a screening measure are likely to be identified subsequently if clinicians comply with the recommendation of the Committee on Children with Disabilities and screen development repeatedly at all health supervision visits. The most effective tools for use in primary care are those that rely on information from parents. Parent-based tools eliminate the need to obtain cooperation from children who are noncompliant, afraid, asleep, or even sick. Such tests can be completed in waiting rooms, sent home in preparation for a follow-up appointment, or administered by interview or over the telephone when illiteracy is likely or when families do not make regular health supervision visits. Many parent-based tools are published in Spanish and other languages. Most screens relying on information from parents are far briefer than tools that elicit children’s skills directly and can be equally accurate. Finally, some measures have options for directly eliciting skills from children when communication between parent and provider is problematic (eg, new foster parents or nonprimary caretakers who may not know much about the child). The question has been raised whether information from parents can be trusted. What about parents who are less educated, live in isolated rural areas, have little parenting experience, or appear highly anxious or depressed? Research shows that almost all parents, if presented with well-constructed questions, can give accurate information about their child, regardless of differences in socioeconomic status, geographic location, or parental well-being. One of the reasons is that parents usually derive their responses by comparing their child to others, often while waiting for pediatric care. Comparison is a simple intellectual task, which seems to explain why almost all parents can provide quality information about their children. Nevertheless, parents who have limited education often have limited literacy, and they may respond randomly to questionnaires or omit many items. To circumvent this, it always is wise to ask parents before giving them forms whether they would like to complete measures on their own or have someone go through them with them. Several high-quality tools relying on parent report (descriptions of children’s behavior, skills, and environments) are described in Table 1. All meet standards for screening test accuracy, and all take 10 or fewer minutes to complete. One of the tools is the standard clinic intake form used at the University of Washington in Seattle. It detects environmental risk factors for developmental problems, such as limited parental education, parental mental health problems (including depression), history of abuse as a child (which is associated with too permissive or too punitive parenting), limited social support, and substance abuse. Imbedded within the form are questions about parental interest in seeking services for these problems, which makes it easier for clinicians to offer focused in-office counseling and referrals. The children of these parents may be identified by developmental/behavioral screening measures, but identifying children who have a high degree of environmental risk helps clinicians know when to suggest developmental stimulation activities and other services (eg, Head Start, quality child care, family training, and social work/mental health intervention). The Parents’ Evaluation of Developmental Status (PEDS) was developed out of four cross-validation studies on a nationally representative sample of families. This tool is especially useful in primary care because it is brief and makes use of parents’ concerns or judgments about their child’s developmental and behavioral status. Probabilities of disabilities are assigned to parental complaints. This information, which takes about 2 minutes to elicit and interpret, enables physicians to determine the need to refer and where, when to provide advice about child-rearing and developmental stimulation, when to provide reassurance, when children should be monitored more vigilantly, and when additional screening is needed. Thus, this evidenced-based triage tool and guidance system helps to manage a wide range of psychosocial issues that arise in pediatric offices while also offering a high degree of accuracy in selecting among the many possible responses to parental complaints. A completed PEDS response form is presented in Figure 1. Although many clinicians routinely ask questions not unlike those presented in PEDS, research shows that parents do not respond well to alternative wordings. For example, “Do you have any worries about your child’s development? ” is not effective because only 50% of parents understand the word “development” and because the word “worries” is too onerous. Parents do not always respond the first time they are asked about their concerns. Across several studies, about 40% of parents reported having concerns but not sharing them with their child’s clinician. Finally, when parents do respond to informal questions about concerns, they are not always fully prepared to discuss them. Parents, unlike professionals, may not think about development as a series of domains (eg, expressive and receptive language, fine and gross motor, personal-social). For these reasons, PEDS gives parents multiple opportunities to express their concerns and prompts them to consider how their children are doing in each area. This helps the parent who initially complains about obedience, for example, to consider whether the child hears well enough; has the motor skills, memory, or attention to comply with requests; or has the language skills to understand what he or she was asked to do. PEDS also provides much-needed guidance on scoring and interpreting parents’ concerns. For example, many parents present their concerns tentatively (eg, “I used to be worried, but I think he’s doing better now” or “She’s my first, so I’m not really sure but…. ”). Research shows that unless such responses are categorized as concerns, developmental delays will be underdetected. Interpretation of parents’ concerns also is challenging because only some concerns are strong predictors of problems. Further, the predictive concerns change according to the age of the child. To account for this, PEDS includes a longitudinal score form that illustrates the changing nature of predictive concerns and includes a column for each age at which the American Academy of Pediatrics recommends a health supervision visit. The PEDS score form then directs clinicians to one of five paths on the PEDS Interpretation Form (Fig. 2). The interpretation form provides a single continuous record of developmental/behavioral surveillance, anticipatory guidance, and developmental promotion efforts. Path A (Fig. 2) is followed when parents have two or more checks in the shaded boxes, which indicate that there are multiple significantly predictive concerns. Their children have 20 times the risk of disabilities compared with children whose parents do not have concerns, and almost 70% of affected children meet criteria for special education services or perform below average in language, intelligence, and academics. Referrals for diagnostic evaluations are needed, and further screening should be avoided because it leads to under-referrals. The PEDS interpretation form also helps test users decide on the necessary broad types of evaluations. Almost 80% of children requiring audiologic and speech-language evaluations to determine eligibility for special services have parents who raise two or more concerns about receptive language, school, social, or self-help skills. More than 70% of children whose parents raise two or more concerns in other areas need an assessment by a psychologist or educational diagnostician (who can give educational or adaptive behavior measures) to determine eligibility. Even with this referral guidance, clinicians should use their judgment to decide if mental health services, occupational or physical therapy, Head Start, or other interventions also are needed. Path B is followed when parents have a single significant concern (65% of the time parents are concerned about expressive language skills). Their children have eight times the risk of disabilities; 46% have either disabilities or below-average achievement. Although it is possible to refer this entire group for diagnostic testing because of their moderate but not high rate of disabilities, over-referrals can be reduced by administering a second developmental screening test. The results of screening tests are used to determine which children need referrals for developmental evaluations and which children and parents need suggestions for promoting development. Busy clinicians may wish to refer to the public schools or to child-find services for additional screening or they can send families home with one of the other tools listed in Table 1 in preparation for a follow-up appointment. Research showed that many children in Path B who received passing scores on screening still performed in the below-average range on diagnostic measures. This suggests that children in Path B (and Path A) who are found ineligible for early intervention programs should be enrolled in early stimulation programs or quality preschools if possible to prevent potentially emerging problems. Otherwise, the development of children on Path B should be monitored frequently (eg, twice a year) because of their continuing risk for delays and emerging problems. Their parents also should be advised about techniques for stimulating areas of development critical for school success, such as language and cognitive skills. Path C is followed when parents have nonsignificant concerns (83% of the time these are about behavior). Their children have only 1. 3 times the risk of developmental problems (7%). Administering additional developmental screening tests to this group produces excessive over-referrals (because the error inherent in screening is compounded for very low or very high prevalence samples). This suggests that the best response is to advise parents about behavior management and discipline. However, families who do not respond well to brief advice may have children who have undiagnosed mental health problems. In such cases, behavioral/emotional screening can help identify which children need referrals for mental health services. Several such screens, again relying on information from parents, are listed in Table 1. Families whose children pass such screening but continue to demonstrate problematic behavior need referrals for somewhat less intensive services, such as parent training classes or behavior intervention programs. Path D is followed when parents have no concerns, but there are obvious communication barriers, such as speaking a foreign language not spoken by the clinician or appearing to have mental health or language impairments. Their children have almost five times the risk of disabilities; 54% either meet criteria for special education services or are below average in intelligence, language, or academic skills. Due to this moderate level of risk for disabilities and academic difficulties, additional screening is needed (preferably with measures in which children’s skills are elicited directly rather than via a screening test relying on parental report). Clinicians may find it most effective to refer this group to the public schools or to child-find services for additional screening because translators or social workers are more likely to be available. Children who fail screening and are referred for diagnostic testing but who are found not to qualify for programs require vigilant observation, and their parents need suggestions for promoting development. These children have a high likelihood of below-average intellectual, linguistic, or academic performance and a high concomitant risk for school failure. After-school literacy programs, summer school, and tutoring also may be needed. Path E is followed when parents have no concerns and no apparent communication barriers. Only 5% of these children have disabilities, and only 11% score below average. Additional screening is not needed because it leads to excessive over-referrals. Reassuring parents that their child appears to be developing normally and providing routine monitoring during subsequent health superivision visits appear sufficient for this group. There are many approaches to organizing pediatric offices so that screening tests can be used effectively for detection of problems and monitoring and counseling families. Table 2 lists methods that many pediatricians and residents have found effective and efficient. By following some of these suggestions and using one or more parent-based tools, clinicians should be able to detect and address children’s psychosocial problems quickly and accurately while maintaining patient flow and working within the time constraints of primary care. Such efforts will have substantial long-term impact on the developmental and behavioral health of pediatric patients and their families.