POLICY STATEMENT |
| ABSTRACT |
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Key Words: development developmental disorders developmental screening disabilities children with special health care needs early intervention medical home
Abbreviations: AAPAmerican Academy of Pediatrics CPTCurrent Procedural Terminology
| INTRODUCTION |
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Current detection rates of developmental disorders are lower than their actual prevalence, which suggests that the challenges to early identification of children with developmental disorders have not been overcome.24 A recent survey of American Academy of Pediatrics (AAP) members revealed that despite publication of the 2001 policy statement "Developmental Surveillance and Screening of Infants and Young Children"5 and national efforts to improve developmental screening in the primary care setting, few pediatricians use effective means to screen their patients for developmental problems.2 This 2006 statement replaces the 2001 policy statement and provides an algorithm as a strategy to support health care professionals in developing a pattern and practice of attention to development that can and should continue well beyond 3 years of age.
We recommend that developmental surveillance, as described later, be incorporated at every well-child visit. Any concerns raised during surveillance should be promptly addressed. In addition, standardized developmental screening tests should be administered regularly at the 9-, 18-, and 30-month* visits. Pediatric health care professionals may also find it useful to conduct school-readiness screening before the child's attendance at preschool or kindergarten. These recommendations represent our consensus; further research to evaluate the effectiveness of the proposed approach and available screening tools is encouraged. Separate recommendations aimed at the screening of children for behavioral and emotional disorders are also under consideration by the AAP and are not included in this document.
The detection of developmental disorders is an integral component of well-child care. Title V of the Social Security Act (42 USC Chapter 7, Subchapter V 
701-710 [1989]) and the Individuals With Disabilities Education Improvement Act (IDEA) of 2004 (Pub L No. 108-446) reaffirm the mandate for child health professionals to provide early identification of, and intervention for, children with developmental disabilities through community-based collaborative systems. The medical home is the ideal setting for developmental surveillance and screening of children and adolescents. Parents expect their medical home, as the site of their child's continuous and comprehensive care, to be interested in children's development throughout childhood and adolescence, to competently identify developmental strengths and weaknesses, and to be knowledgeable of available community resources to facilitate referrals when needed.
Developmental screening is included in the AAP "Recommendations for Preventive Pediatric Health Care"6 or "periodicity schedule" and is further recommended by the 2 current AAP compilations of well-child care guidelines: Bright Futures7 and Guidelines for Health Supervision III.8 In collaboration with other experts in child health care, the AAP is currently revising Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents. It is hoped that the third edition of Bright Futures being developed by the AAP and the revised periodicity schedule will be consistent with the recommendations of this document.
Note Regarding Language
Within the context of this document, clear distinctions have been drawn among (1) surveillance, the process of recognizing children who may be at risk of developmental delays, (2) screening, the use of standardized tools to identify and refine that recognized risk, and (3) evaluation, a complex process aimed at identifying specific developmental disorders that are affecting a child. These definitions build on existing definitions.9 In a further effort to ensure clarity throughout the document, we have purposefully avoided the term "assessment." Although the Individuals With Disabilities Education Improvement Act of 2004and othersuse "assessment" as a synonym for "evaluation," this usage is not universally shared.
"Developmental delay" is used in this statement for the condition in which a child is not developing and/or achieving skills according to the expected time frame. The terms "delayed development," "disordered development," and "developmental abnormality" are used synonymously. "Developmental disorder" and "developmental disability" refer to a childhood mental or physical impairment or combination of mental and physical impairments that result in substantial functional limitations in major life activities.10
THE ALGORITHM
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2. Perform Surveillance
Developmental surveillance is a flexible, longitudinal, continuous, and cumulative process whereby knowledgeable health care professionals identify children who may have developmental problems. Surveillance can be useful for determining appropriate referrals, providing patient education and family-centered care in support of healthy development, and monitoring the effects of developmental health promotion through early intervention and therapy.
A great breadth and depth of information is considered in comprehensive developmental surveillance; it is important to note, however, that much of this information (eg, static risk factors such as low birth weight, results of previous screenings) will accumulate within the child's health record, where it can be reviewed and flagged as necessary before the visit.
There are 5 components of developmental surveillance: eliciting and attending to the parents' concerns about their child's development; documenting and maintaining a developmental history; making accurate observations of the child; identifying risk and protective factors; and maintaining an accurate record of documenting the process and findings.
Eliciting and Attending to the Parents' Concerns
Parents and child health professionals have valuable observation skills, and they share the goal of ensuring optimal health and developmental outcome for the child. In the optimal situation, the child health professional elicits parental observations, experiences, and concerns and recognizes that parental concerns mandate serious attention. The literature suggests that posing simple questions to parents related to concerns about the child's development, learning, or behavior can elicit quality information.1113 Health care professionals might ask, for example, "Do you have any concerns about your child's development? Behavior? Learning?" Asking parents specifically about their child's behavior can yield valuable information regarding development, because parents do not necessarily differentiate between behavior and development, and developmental delays often manifest through behavior. The absence of parental concern does not preclude the possibility of serious developmental delays.14 The health care professional must attend to all aspects of developmental surveillance.
Maintaining a Developmental History
"What changes have you seen in your child's development since our last visit?" A developmental history, updated through this or similar questions, should be a component of any history taken during a well-child visit and can assist a child health professional in identifying developmental abnormalities that warrant further investigation. Age-specific queries, such as asking whether the child is walking or pointing, are also valuable.
In addition to attending to delayed developmentwhereby children acquire skills more slowly than their peerschild health professionals should give equal consideration to other developmental abnormalities.15 Deviations in development, whereby children develop skills out of the usual sequence, are recognized in disorders such as cerebral palsy and autism. Dissociationdiffering rates of development in different developmental spherescommonly occurs with developmental disorders. Children with mental retardation or autistic spectrum disorders, for example, commonly display normal motor skills and delayed language development. Conversely, children with cerebral palsy of the spastic diplegic type often display delayed motor skills with normal language function. Regression, the loss of developmental skills, is a very serious developmental problem suggestive of an active, ongoing neurologic problem.
Making Accurate and Informed Observations of the Child
As trained and experienced professionals, pediatricians and other child health professionals have the expertise and comparative knowledge to identify developmental concerns. A careful physical and developmental examination within the context of the preventive care visit is integral to developmental surveillance.16 Limited evidence suggests that observation of the parent-child interaction may aid in identifying children with delayed development.17
Identifying the Presence of Risk and Protective Factors
A risk assessment is an important part of developmental surveillance. Environmental, genetic, biological,16,18 social, and demographic factors19 can increase a child's risk for delays in development. Multiple risk factors can amplify each other.20,21 Children with established risk factors may be referred directly for developmental evaluation or may require developmental surveillance at more frequent intervals than children without risk factors.
Child health professionals should identify protective factors as well as risk factors in children's lives. Strong connections within a loving, supportive family, along with opportunities to interact with other children and grow in independence in an environment with appropriate structure, are important assets in a child's life. These factors, associated with resiliency in older children, are important components in each family's story.22
Documenting the Process and Findings
Medical charts, in paper or electronic form, should document all surveillance and screening activities during preventive care visits. In addition, specific actions taken or planned, such as scheduling an earlier follow-up visit, scheduling a visit to discuss developmental concerns more fully, or referrals to medical specialists or early childhood programs and specialists, should also be noted. A paper medical chart might contain a "developmental growth chart" on which the results of developmental surveillance and formal screens are recorded in relationship to the child's age and the dates at the time the findings were obtained. An electronic chart, on the other hand, may allow for the development of a form on which developmental findings and plans are recorded and from which prompts for further action may occur automatically. Recent technologies that automate developmental risk assessments within the waiting room through computer-interpreted paper forms or information kiosks are also increasingly commonplace. We encourage continued development and scientific evaluation of these technologies given their potential to facilitate the process of developmental surveillance and screening.
3. Does Surveillance Demonstrate Risk?
The concerns of both parents and child health professionals should be included in determining whether surveillance suggests that the child may be at risk of developmental problems. If parents or the child health professional express concern about the child's development, a developmental screening to address the concern specifically should be conducted. This screening may require a separate visit; if so, the visit should be held as soon as possible.
Reassurance has a role in the clinical encounter but varies depending on the progress and outcome of developmental surveillance. Reassurance should be rooted in and reference the findings of developmental surveillance. If, for example, developmental surveillance indicates that the child is at low risk of a developmental disorder, reassurance can be offered with caution and a planned outcome. Specific, simple, age-specific developmental goals can be identified, and parents can be encouraged to schedule recheck appointments if the child is not attaining those goals. In reassuring the parents, the pediatrician should emphasize the importance of continual surveillance and screening.
4. Is This a 9-, 18-, or 30-Month* Visit?
All children, most of whom will not have identifiable risks or whose development appears to be proceeding typically, should receive periodic developmental screening using a standardized test. In the absence of established risk factors or parental or provider concerns, a general developmental screen is recommended at the 9-, 18-, and 30-month* visits. Consideration of a number of factors, including the time available to focus on developmental concerns during a routine pediatric visit, led to these recommended ages.
When child health professionals use only clinical impressions rather than formal screening, estimates of children's developmental status are much less accurate.30 Including developmental screening tools at targeted developmental ages is intended to enhance the precision of the developmental surveillance process. These recommended ages for developmental screening are suggested only as a starting point for children who appear to be developing normally; surveillance should continue throughout childhood, and screenings should be conducted anytime that concerns are raised by parents, child health professionals, or others involved in the care of the child. At the 4-year visit, a screening for school readiness is appropriate.
5a and 5b: Administer Screening Tool
Developmental screening is the administration of a brief standardized tool that aids the identification of children at risk of a developmental disorder. Many screening tools can be completed by parents and scored by nonphysician personnel; the physician interprets the screening results.
Developmental screening does not result in either a diagnosis or treatment plan but rather identifies areas in which a child's development differs from same-age norms. Developmental screening that targets the area of concern is indicated whenever a problem is identified during developmental surveillance. Because development is dynamic in nature and surveillance and screening have limits, periodic screening with a validated instrument should occur so that a problem not detected by surveillance or a single screening can be detected by subsequent screening. Repeated and regular screening is more likely than a single screening to identify problems, especially in later-developing skills such as language. Waiting until a young child misses a major milestone such as walking or talking may result in late rather than early recognition, increasing parental dissatisfaction and anxiety and depriving the child and family of the benefits of early identification and intervention.
Table 1 provides a list of developmental screening tools; a discussion of how to choose an appropriate screening tool is included in "Implementing the Algorithm."
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7. Make Referrals for Developmental and Medical Evaluations and Early Developmental Intervention/Early Childhood Services
If screening results are concerning, the child should be scheduled for developmental and medical evaluations. These evaluations may occur at a different visit or series of visits or often in a different setting by other professionals. The separate box in which these steps are placed in the algorithm (Fig 1) is intended to represent the possibility that these actions will occur at a different time and location. However, they should be scheduled as quickly as possible, and professionals should coordinate activities and share findings.
8. Developmental and Medical Evaluations
Developmental Evaluation
When developmental surveillance or screening identifies a child as being at high risk of a developmental disorder, diagnostic developmental evaluation should be pursued. This evaluation is aimed at identifying the specific developmental disorder or disorders affecting the child, thus providing further prognostic information and allowing prompt initiation of specific and appropriate early childhood therapeutic interventions.
Children with neurodevelopmental disorders also often have other associated developmental or behavior disorders.3133 Identification of these disorders can lead to further evaluation and treatment. Pediatric subspecialists such as neurodevelopmental pediatricians, developmental and behavioral pediatricians, child neurologists, pediatric physiatrists, or child psychiatrists can perform the developmental diagnostic evaluation, as can other early childhood professionals in conjunction with the child's primary care provider. Such early childhood professionals include early childhood educators, child psychologists, speech-language pathologists, audiologists, social workers, physical therapists, and occupational therapists, ideally working with families as part of an interdisciplinary team and with the medical home.
Medical Evaluation
In addition to the developmental evaluation, a medical diagnostic evaluation to identify an underlying etiology should be undertaken. This evaluation should consider biological, environmental, and established risk factors for delayed development.3437 Vision screening and objective hearing evaluation; review of newborn metabolic screening and growth charts; and an update of environmental, medical, family, and social history for additional risk factors are integral to this evaluation.
A comprehensive medical evaluation is essential whenever a delay is confirmed. This evaluation varies somewhat with the risk factors and findings and may include brain imaging, electroencephalogram (EEG), genetic testing, and/or metabolic testing.37
Identification of an etiology may provide parents with a greater depth of understanding of their child's disability. Identifying an etiology also can affect various aspects of treatment planning, including specific prognostic information, genetic counseling around recurrence risk and family planning, specific medical treatments for improved health and function of the child, and therapeutic intervention programming.38 An underlying etiology will be identified in approximately one quarter of cases of delayed development, with higher rates (>50%) in children with global developmental delays and motor delays and lower rates (<5%) in children with isolated language disorders.39
This evaluation can be performed by a trained and skilled pediatrician; a pediatric subspecialist such as a neurodevelopmental pediatrician, child neurologist, or developmental/behavioral pediatrician; or through affiliated medical professionals such as pediatric geneticists or physiatrists. The primary care provider within the medical home should develop an explicit comanagement plan with the specialist(s).
Early Developmental Intervention/Early Childhood Services
Early intervention programs can be particularly valuable when a child is first identified to be at high risk of delayed development, because these programs often provide evaluation services and can offer other services to the child and family even before an evaluation is complete.25 These services can include developmental therapies, service coordination, social work services, assistance with transportation and related costs, family training, counseling, and home visits. The diagnosis of a specific developmental disorder is not necessary for an early intervention referral to be made. Child health professionals should realize that a community-based early intervention evaluation may not address children with specific medical risks, and further developmental and medical evaluation will often be necessary for children with established delays.
Establishing an effective and efficient partnership with early childhood professionals is an important ingredient of successful care coordination for children within the medical home. The partnership is built on shared interest in the developmental outcomes of children and recognition of the different skill sets of child health professionals and educators. For additional information regarding care coordination, see the AAP policy statement "Care Coordination in the Medical Home: Integrating Health and Related Systems of Care for Children With Special Health Care Needs."40
Given the variety of community settings in which health care is provided, the pediatrician may consult early childhood professionals who work in specialized health care centers, university centers, early intervention programs, early childhood educational programs, or private practices. Whenever possible, communities should coordinate resources; this is especially true in preventing delays in care or unnecessary duplication of service.
The child's medical charts, whether electronic or paper, should be organized to create a system that guarantees continuity of care, especially when the child is referred to specialists and/or community agencies. In addition, a means of incorporating information about a child's developmental status from sources outside the medical home should be available. The child health care chart should be designed to alert the clinician if further attention is needed between regular periodic visits.
9. Is a Developmental Disorder Identified?
If a developmental disorder is identified, the child should be identified as a child with special health care needs, and chronic-condition management should be initiated (see No. 10 below). If a developmental disorder is not identified through medical and developmental evaluation, the child should be scheduled for an early return visit for further surveillance, as mentioned previously. More frequent visits, with particular attention paid to areas of concern, will allow the child to be promptly referred for further evaluation if any additional evidence of delayed development or a specific disorder emerges.
10. Identify as a Child With Special Health Care Needs and Initiate Chronic-Condition Management
When a child is discovered to have a significant developmental disorder, that child becomes a child with special health care needs even if that child does not have a specific disease etiology identified. Such a child should be identified by the medical home for appropriate chronic-condition management and regular monitoring and entered into the practice's children and youth with special health care needs registry.41 Every primary care practice should create a registry for the children in the practice who have special health care needs.
The medical home provides a triad of key primary care services including preventive care, acute illness management, and chronic-condition management. A program of chronic-condition management provides proactive care for children and youth with special health care needs, including condition-related office visits, written care plans, explicit comanagement with specialists, appropriate patient education, and effective information systems for monitoring and tracking.
Management plans should be based on a comprehensive needs assessment conducted with the family. Management plans should include relevant, measurable, and valid outcomes. These plans must be reviewed on a regular basis and updated as necessary. The child health professional should actively participate in all care-coordination activities for children who have complex health conditions in addition to developmental problems. Decisions regarding appropriate therapies and their scope and intensity should be determined in consultation with the child's family, therapists, and educators (including early intervention or school-based programs) and should be based on knowledge of the scientific evidence for their use.
Children with established developmental disorders often benefit from referral to community-based family support services such as respite care, parent-to-parent programs, and advocacy organizations. Some children may qualify for additional benefits such as supplemental security income, public insurance, waiver programs, and state programs for children and youth with special health care needs (Title V). Parent organizations, such as Family Voices, and condition-specific associations can provide parents with information and support and can also provide an opportunity for advocacy.
| IMPLEMENTING THE ALGORITHM |
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Broad screening tools should address developmental domains including fine and gross motor skills, language and communication, problem solving/adaptive behavior, and personal-social skills. Screening tools also must be culturally and linguistically sensitive. Many screening tools are available, and the choice of which tool to use depends on the population being screened, the types of problems being screened for in that population, administration and scoring time, any administration training time, the cost of the tool, and the possibilities for adequate payment.
Screening tests should be both reliable and valid, with good sensitivity and specificity.
If a test incorrectly identifies a child as delayed, it will result in overreferrals. If a test incorrectly identifies a child as normal, it results in underreferrals. For developmental screening tests, scoring systems must be developed that minimize underreferrals and overreferrals. Trade-offs between sensitivity and specificity occur when devising these scoring systems. Sensitivity and specificity levels of 70% to 80% have been deemed acceptable for developmental screening tests.42 These values are lower than generally accepted for medical screening tests because of the challenges inherent in measuring child development and the absence of specific curative and clearly effective treatments. However, combining developmental surveillance and periodic screening increases the opportunity for identification of undetected delays in early development. Overidentification of children using standardized screening tools may indicate that this group of children includes some with below-average development and/or significant psychosocial risk factors.43 These children may benefit from other community programs as well as closer monitoring of their development by their families, pediatric health professionals, and teachers or caregivers.
Table 1 provides a list of developmental screening tools and their psychometric testing properties. These screening tools vary widely in their psychometric properties. This list is not exhaustive; other standardized, published tools are available. We look forward to further evaluation/validation of available screening instruments as well as the continued development of new tools with stronger properties. Child health professionals are encouraged to familiarize themselves with a variety of screening tools and choose those that best fit their populations, practice needs, and skill level.
Incorporating Surveillance and Screening in the Medical Home
A quality-improvement approach may be the most effective means of building surveillance and screening elements into the process of care in a pediatric office.44 Improving developmental screening and surveillance should be regarded as a "whole-office" endeavor and not simply a matter of clinician continuing education or the addition of tasks to well-child visits. Front-desk procedures, such as appropriate scheduling for screening visits and procedures for flagging children with established risk factors, need to be explicitly designed by the office staff. Nonphysician staff may need training in the administration of developmental screening tools. The input of consumers is crucial to developing an effective system and can be accomplished by adding a parent to an office planning team, by using parent focus groups, or by administering parent questionnaires. Specific to developmental screening could be consumer opinion about preferences for completing questionnaires in the office or before the visit, how they would like to be informed about the results of screening, how parents of children with identified conditions associated with developmental delay would like to have their children's development monitored, or feedback on parental satisfaction with their child's developmental screening or feedback on the referral process.
Screening Payment
Separate Current Procedural Terminology (CPT)45 codes (see Table 2) exist for developmental screening (96110: developmental testing; limited) and testing (96111: developmental testing; extended). The relative values for these codes are published in the Medicare Resource-Based Relative Value Scale and reflect physician work, practice expenses, and professional liability expenses. Table 2 outlines the appropriate codes to use when billing for the processes described in the algorithm. Health plans are encouraged to adhere to CPT guidelines and provide coverage and payment for developmental screening and testing.
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The codes in Table 2 may be applicable to the phases of developmental surveillance, screening, and evaluation described in the proposed algorithm (Fig 1).
| SUMMARY |
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When a child has a positive screening result for a developmental problem, developmental and medical evaluations to identify the specific developmental disorders and related medical problems are warranted. In addition, children who have positive screening results for developmental problems should be referred to early developmental intervention and early childhood services and scheduled for earlier return visits to increase developmental surveillance.
Children diagnosed with developmental disorders should be identified as children with special health care needs; chronic-condition management for these children should be initiated.
| RECOMMENDATIONS |
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For Policy and Advocacy
For Research and Development
| POLICY REVISION COMMITTEE (PRC) |
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Paul H. Lipkin, MD, PRC Chairperson
| Section on Developmental and Behavioral Pediatrics |
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Lynn M. Wegner, MD
| Bright Futures Steering Committee |
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Joseph F. Hagan, Jr, MD
| Medical Home Initiatives for Children With Special Needs Project Advisory Committee |
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Nancy Swigonski, MD, MPH
| Liaisons |
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Partnership for Policy Implementation (PPI)
Donald Lollar, EdD
Centers for Disease Control and Prevention
| Staff |
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Amy Brin, MA
Mary Crane, PhD, LSW
Amy Gibson, MS, RN
Stephanie Mucha Skipper, MPH, Principal Staff
Darcy Steinberg-Hastings, MPH
| Consultant |
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| FOOTNOTES |
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Numbers and headings refer to steps in the algorithm (Fig 1). ![]()
| REFERENCES |
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