Abstract
Early identification of children with developmental delays is important in the primary care setting. The pediatrician is the best-informed professional with whom many families have contact during the first 5 years of a child's life. Parents look to the pediatrician to be the expert not only on childhood illnesses but also on development. Early intervention services for children from birth to 3 years of age and early childhood education services for children 3 to 5 years of age are widely available for children with developmental delays or disabilities in the United States. Developmental screening instruments have improved over the years, and instruments that are accurate and easy to use in an office setting are now available to the pediatrician. This statement provides recommendations for screening infants and young children and intervening with families to identify developmental delays and disabilities.
BACKGROUND
Developmental and behavioral problems are commonly seen by pediatricians and other primary care practitioners. According to a recent estimate, 12% to 16% of American children have developmental or behavioral disorders.1 Identifying and addressing these concerns is of great importance so that appropriate intervention can be instituted. The primary care practitioner's office is the only place where most children younger than 5 years are seen and is ideal for developmental and behavioral screening.
Developmental surveillance is an important technique used by pediatricians. Dworkin defined developmental surveillance as “a flexible, continuous process whereby knowledgeable professionals perform skilled observations of children during the provision of health care. The components of developmental surveillance include eliciting and attending to parental concerns, obtaining a relevant developmental history, making accurate and informative observations of children, and sharing opinions and concerns with other relevant professionals.”2 Pediatricians often use age-appropriate developmental checklists to record milestones during preventive care visits as part of developmental surveillance.
Screening is a “brief assessment procedure designed to identify children who should receive more intensive diagnosis or assessment.”3 Developmental screening is aimed at identifying children who may need more comprehensive evaluation. It communicates the pediatrician's interest in the child's development, not just his or her physical health.4 Developmental evaluation may lead to a definitive diagnosis, development of an interdisciplinary comprehensive plan of remediation, realization that there is no significant problem, or a decision that additional observation is warranted.
The Individuals With Disabilities Education Act (IDEA) Amendments of 19975 mandate early identification of, and intervention for, developmental disabilities through the development of community-based systems. Because the passage of IDEA, the emphasis of screening has shifted to identifying disabilities at a younger age, with the current focus being on infants and children from birth through 2 years of age. At this age, the pediatrician is involved very closely with children and families and is in a position to have significant impact on their functioning. The IDEA requires physicians to refer children with suspected developmental delays in a timely manner to the appropriate early intervention system.
The pediatrician has specific roles within the system that are described in a recent policy statement by the Committee on Children With Disabilities.6 Children and families are best served when pediatricians' screening efforts are coordinated with tracking and intervention services available in the community. Developmental surveillance and screening during preventive health care visits also provide the ideal opportunity for the pediatrician to offer anticipatory guidance to the family about supporting their child's development.
STATEMENT OF THE PROBLEM
The emphasis on earlier identification creates the opportunity to provide the benefits of early intervention but also poses greater challenges in screening. Parents expect their pediatricians to give them guidance on developmental issues but will turn to other community systems if the pediatrician does not fill this role. Lack of appropriate physician guidance may result in delays in diagnosis and appropriate intervention. Detecting developmental delays early is challenging. Delays or deviations in development may come to the attention of professionals and parents because a child is known to have risk factors by history, has physical findings or medical conditions likely to be associated with delays, or manifests delays at the time of observation. A delay in a skill becomes evident only at the age when a specific developmental milestone is expected. Early recognition of delays requires in-depth knowledge of the precursors to the skill as well as clinical judgment. Waiting until a young child misses a major milestone, such as walking or talking, may result in late rather than early recognition. It is especially important to recognize delays in language skills early, because early intervention may improve the outcome of children with hearing loss and may enable earlier diagnosis of children with mental retardation and pervasive developmental disorders.7,,8 Universal hearing screening is especially important in the improving language skill outcome and is recommended by the American Academy of Pediatrics.9
Mild delays and deviations are often hard to detect, because children develop in spurts and, at times, discontinuously. Developmental disabilities also encompass a spectrum of problems of varying kinds and severity. Although there is broad agreement as to what constitutes clear-cut delay or deviation, there is not complete consensus among professionals or between parents and physicians as to the severity at which evaluation and intervention become appropriate. The central dilemma for the pediatrician who screens patients is that identification must precede the provision of services, and the act of identifying a child as one who needs a thorough evaluation for developmental disabilities provokes anxiety in parents. This concern may create a tendency to identify only markedly delayed children, denying other children potential access to needed care.
Child development is a dynamic process and is often hard to measure by its very nature. The various streams of development, including gross motor, fine motor, language, cognitive, and adaptive behavior, are interrelated and complex within themselves. Children develop skills variably and show a new skill inconsistently when first mastering it. A single test at one point in time only gives a snapshot of the dynamic process, making periodic screening necessary to detect emerging disabilities as a child grows.
Developmental screening tests have inherent limitations that have led to controversy regarding their use. Developmental testing of young children, whether for screening or evaluation, has limited ability to predict future functioning but is a valid and reliable way to assess skills in a variety of domains. Developmental screening tools undergo extensive testing for validity, reliability, and accuracy and are standardized using children and families who represent the cultural, linguistic, and economic diversity of the intended population to be as accurate as possible.
Sensitivity and specificity of developmental screening tools are measured by comparing the test results to that of gold-standard developmental evaluation tools. Good developmental screening tests have sensitivities and specificities of 70% to 80% largely because of the nature and complexity of measuring the continuous process of child development.10 This leads to overdetection and underdetection. Because screening needs to be periodic, a child not detected by a single screening will be detected by a subsequent screening. Children who have been overreferred may benefit from other community programs as well as a close watch on their development. However, when pediatricians use only clinical impressions rather than formal screening, estimates of children's developmental status are much less accurate.11,,12
The advantages of developmental screening instruments are that they state their norms explicitly, serve as a reminder to the pediatrician to observe development, are an efficient way to record the observations, and help the pediatrician identify more children with delays. The major disadvantage to the pediatrician is that they take time and effort to administer and interpret, which are largely not reimbursed. Therefore, developmental screening instruments are not widely used in pediatric practice.13–15
NEW DEVELOPMENTS
The science of developmental testing has improved in the last 10 years, making it easier for the pediatrician to accurately and efficiently screen development. Parental report of skills and concern had been considered too inaccurate to be used as a screening tool alone. However, several studies have shown that parental report of current skills is predictive of developmental delay.16–18This has led to the development of parental report instruments that have been well tested in economically and culturally diverse populations and provide accurate information about development. Barriers to the use of parent report instruments are the inability to read or understand the language. Both of these can be easily overcome through oral administration or translation. The explicit use of parental reports has the added advantage of parents being active participants in the evaluation of their children and shows respect for their expertise.
Systematically eliciting parental concern about development is an important new method of identifying infants and young children with developmental problems. Parental concerns about language, fine-motor, cognitive, and emotional-behavioral development are highly predictive of true problems.19–22 Recently, Glascoe19has shown that by asking about developmental concerns systematically, the pediatrician can screen for developmental delays as effectively as by using formal developmental screening tools that require developmental examination of the child.
Pediatricians now have many developmental screening tools from which to choose. The best instruments have good psychometric properties, including adequate sensitivity, specificity, validity, and reliability, and have been standardized on diverse populations. Parent report instruments, such as the Parents' Evaluation of Developmental Status,23 Ages and Stages Questionnaires,24and Child Development Inventories,25 have excellent psychometric properties and the advantage of requiring much less time from the pediatrician than instruments that require direct examination. Instruments such as the Denver-II screening test,26 Bayley Infant Neurodevelopmental Screener,27 Battelle Developmental Inventory,28 Early Language Milestone Scale,29 and Brigance Screens30–32 involve direct examination of the child's skills. The CAT-CLAMS is a promising test designed specifically for pediatricians to use in the office that assesses the child's cognitive and language skills independently and uses parental report and direct testing of the child's skills.33 These instruments are listed as examples and should not be considered specific endorsements.
Each screening instrument has strengths and weaknesses. For example, the Denver-II screening test is used widely but has modest sensitivity and specificity depending on the interpretation of questionable results.34 Each test also needs to be administered with adherence to specific instructions; otherwise, results are not valid. The choice of testing method may depend on risk factors in the population, time allotted for the procedure, availability of other sources of developmental screening in the community, and personal preference of the pediatrician. Recent reviews of commonly used screening instruments35–37 can help guide the pediatrician's choice of screening instruments.
Screening for behavioral and psychosocial problems in young children poses particular challenges. Children with developmental delays are at higher risk for behavioral problems. Many developmental screening instruments for young children do not address these areas adequately. Asking specific questions is most important. Tools such as the Temperament and Atypical Behavior Scale,38 Child Behavioral Checklist,37 The Carey Temperament Scales,40 Eyberg Child Behavior Inventory,41Pediatric Symptom Checklist,42 and Family Psychosocial Screening,43 among others, are helpful in detecting behavioral concerns.
Lately, there has been increased interest in screening toddlers for autistic spectrum disorders because of a perceived rise in prevalence and availability of early diagnosis and intervention. The American Academy of Neurology and the Child Neurology Society recently published a practice parameter that recommends use of developmental screening tools with good sensitivity and specificity at every preventive care visit, use of specific probe questions for early signs of autism, and use of specific autism screening tools when concerns arise.44 Specific autism screening tools, such as the Checklist for Autism in Toddlers (CHAT),45 may help guide the pediatrician in additional diagnostic referral but may provide false reassurance because of poor sensitivity and excellent specificity.46 Additional information on screening young children for autism is contained in the American Academy of Pediatrics policy statement and technical report “The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children.”47,,48 Developmental screening programs will take time and effort to administer in the pediatric office setting. A recent cost-benefit analysis of developmental screening approaches, including costs of administration, interpreting results, diagnostic testing, and treatment, showed that the use of parental reports was by far the least costly to the pediatrician in the short term.49 However, reimbursement for developmental screening services is often inadequate, especially when it is considered part of the preventive care visit rather than a separate service. A separateCurrent Procedural Terminology code exists for developmental screening (96110); however, reimbursement is inconsistent.50
RECOMMENDATIONS
All infants and young children should be screened for developmental delays. Screening procedures should be incorporated into the ongoing health care of the child as part of the provision of a medical home, as defined by the Academy.51 To screen for developmental delays or disabilities and intervene with the identified children and their families, the primary pediatrician providing the medical home should:
Maintain and update her or his knowledge about developmental issues, risk factors, screening techniques, and community resources, such as early intervention, school, Title V, and other community-based programs, for consultation, referral, and intervention.
Acquire skills in the administration and interpretation of reliable and valid developmental screening techniques appropriate for the population.
Develop a strategy to provide periodic screening in the context of office-based primary care, including the following:
Recognizing abnormal appearance and function during health care maintenance examinations;
Recognizing medical, genetic, and environmental risk factors while taking routine medical, family, and social histories;
Listening carefully to parental concerns and observations about the child's development during all encounters;
Recognizing troubled parent-child interaction by reviewing history or by observation;
Performing periodic screenings of all infants and young children during preventive care visits; and
Recognizing the importance that test procedures and processes be culturally sensitive and appropriate to the population.
4. Present the results of the screening to the family using a culturally sensitive, family-centered approach.
5. With parental agreement, refer children with developmental delays in a timely fashion to the appropriate early intervention and early childhood education programs and other community-based programs serving infants and young children.
6. Determine the cause of delays or refer to appropriate consultant for determination. Screen hearing and vision to rule out sensory impairments.
7. Maintain links with community-based resources, such as early intervention, school, and other community-based programs, and coordinate care with them.
8. Increase parents' awareness of developmental disabilities and resources for intervention by such methods as display and distribution of educational materials in the office.
9. Be available to families to interpret consultants' findings.
Ongoing involvement with the family permits the pediatrician to respond to parental concerns about the child's development when such concerns exist. When parents are not aware that a delay exists, the pediatrician can guide them toward closer observation of the child and, thus, enable them to recognize the delay. Referral for evaluation and services can take place only after the pediatrician has succeeded in this challenging task. At that point, the pediatrician's role shifts to one of involvement in the evaluation as appropriate, referral to available community resources for intervention and family support, assistance in understanding the evaluation results, assessment and coordination of services, and monitoring the child's developmental progress as part of the provision of a medical home.
CONCLUSION
Early identification of children with developmental delays or disabilities can lead to treatment of, or intervention for, a disability and lessen its impact on the functioning of the child and family. Because developmental screening is a process that selects children who will receive more intensive evaluation or treatment, all infants and children should be screened for developmental delays. Developmental surveillance is an important method of detecting delays. Moreover, the use of standardized developmental screening tools at periodic intervals will increase accuracy. Pediatricians should consider using standardized developmental screening tools that are practical and easy to use in the office setting. Successful early identification of developmental disabilities requires the pediatrician to be skilled in the use of screening techniques, actively seek parental concerns about development, and create links with available resources in the community.
Committee on Children With Disabilities, 2000–2001
Adrian D. Sandler, MD, Chairperson
Dana Brazdziunas, MD
W. Carl Cooley, MD
Lilliam González de Pijem, MD
David Hirsch, MD
Theodore A. Kastner, MD
Marian E. Kummer, MD
Richard D. Quint, MD, MPH
Elizabeth S. Ruppert, MD
Liaisons
William C. Anderson
Social Security Administration
Bev Crider
Family Voices
Paul Burgan, MD, PhD
Social Security Administration
Connie Garner, RN, MSN, EdD
US Department of Education
Merle McPherson, MD
Maternal and Child Health Bureau
Linda Michaud, MD
American Academy of Physical Medicine and Rehabilitation
Marshalyn Yeargin-Allsopp, MD
Centers for Disease Control and Prevention
Section Liaisons
J. Daniel Cartwright, MD
Section on School Health
Chris P. Johnson, MEd, MD
Section on Children With Disabilities
Staff
Karen Smith
Footnotes
The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
- IDEA =
- Individuals With Disabilities Education Act •
- CHAT =
- Checklist for Autism in Toddlers
REFERENCES
- Copyright © 2001 American Academy of Pediatrics
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