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CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Promoting Optimal Development:Identifying Infants and Young ChildrenWith Developmental DisordersThrough Developmental Surveillanceand ScreeningPaul H. Lipkin, MD, FAAP,a Michelle M. Macias, MD, FAAP,b COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTALAND BEHAVIORAL PEDIATRICS

abstractEarly identification and intervention for developmental disorders arecritical to the well-being of children and are the responsibility ofpediatric professionals as an integral function of the medical home. Thisreport models a universal system of developmental surveillance andscreening for the early identification of conditions that affect children’searly and long-term development and achievement, followed by ongoingcare. These conditions include autism, deafness/hard-of-hearing,intellectual and motor disabilities, behavioral conditions, and those seenin other medical conditions. Developmental surveillance is supported atevery health supervision visit, as is as the administration of standardizedscreening tests at the 9-, 18-, and 30-month visits. Developmentalconcerns elicited on surveillance at any visit should be followed bystandardized developmental screening testing or direct referral tointervention and specialty medical care. Special attention to surveillanceis recommended at the 4- to 5-year well-child visit, prior to entry intoelementary education, with screening completed if there are anyconcerns. Developmental surveillance includes bidirectionalcommunication with early childhood professionals in child care,preschools, Head Start, and other programs, including home visitationand parenting, particularly around developmental screening. Theidentification of problems should lead to developmental and medicalevaluations, diagnosis, counseling, and treatment, in addition to earlydevelopmental intervention. Children with diagnosed developmentaldisorders are identified as having special health care needs, withinitiation of chronic condition management in the pediatricmedical home.

aDepartment of Neurology and Development Medicine, Kennedy KriegerInstitute, and Department of Pediatrics, Johns Hopkins School ofMedicine, Baltimore, Maryland; and bDivision of Developmental-Behavioral Pediatrics, Department of Pediatrics, Medical University ofSouth Carolina, Charleston, South Carolina

Clinical reports from the American Academy of Pediatrics benefit fromexpertise and resources of liaisons and internal (AAP) and externalreviewers. However, clinical reports from the American Academy ofPediatrics may not reflect the views of the liaisons or theorganizations or government agencies that they represent.

Drs Lipkin and Macias equally participated in the concept and design,drafting, and revising of the manuscript and approved the manuscriptas submitted.

The guidance in this report does not indicate an exclusive course oftreatment or serve as a standard of medical care. Variations, takinginto account individual circumstances, may be appropriate.

All clinical reports from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

To cite: Lipkin PH, Macias MM, AAP COUNCIL ON CHILDRENWITH DISABILITIES, SECTION ON DEVELOPMENTAL ANDBEHAVIORAL PEDIATRICS. Promoting Optimal Development:Identifying Infants and Young Children With DevelopmentalDisorders Through Developmental Surveillance andScreening. Pediatrics. 2020;145(1):e20193449

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Pediatricians and other child healthcare professionals have madesignificant progress over the pastdecade in meeting the goal of earlyidentification and treatment ofchildren with developmental andbehavioral disorders. There has beenan increase in the practice offormalized developmental screeningin primary health care settings.Specific efforts from within theAmerican Academy of Pediatrics(AAP)1–6 and external to the AAP7,8

have been focused on improvingscreening methods. Multiple effortsalso have been made to improveimplementation.9–14 These initiativeshave included broad guidelinesfocused on identifying general delaysin development1 as well as others toidentify specific disorders orconditions.2,3,6,15 The 2006 AAPpolicy statement on developmentalsurveillance and screening providedthe pediatric health care professionalwith a new paradigm and anaccompanying algorithm1 thatfocused on the use of general,standardized developmentalscreening tests with strongpsychometric properties, includingreliability, validity, sensitivity, andspecificity. Discrete ages for use ofthese tests are recommended inBright Futures: Guidelines for HealthSupervision of Infants, Children, andAdolescents, Fourth Edition and theaccompanying periodicity schedule atthe 9-, 18-, and 30-month well-childvisits.16,17,* The recommendation forscreening at discrete ages contrastedwith earlier statements in whichscreening at every visit wasrecommended. The algorithm wasdesigned to fit within the medicalhome model of care and with use inthe screening of all children duringkey preventive care visits. The policystatement offered guidance on

consultation and referral to otherspecialty physicians as well as toother child developmentprofessionals, early interventionservices, and preschool. It alsorecommended incorporating theprinciples of care for children withspecial health care needs in theprimary care medical home. Thepolicy statement also considereddevelopmental screening paymentissues and worked toward improvingpediatric health care professionals’knowledge on billing and coding forthe recommended procedures,resulting in improved payment acrosspayers18 (AAP, 2012, unpublishedanalysis of 2005 Medstat and 2011TruvenHealth MarketScan outpatientdatabase).

This developmental surveillance andscreening model was incorporatedinto other initiatives and promptedthe writing and revision of severalsimilarly designed guidelines forrelated conditions, including autismspectrum disorder (ASD),2

neuromotor disorders,3 early hearingdetection,6 attention-deficit/hyperactivity disorder (ADHD),19 andbehavioral conditions.5 Theseguidelines increased pediatricattention to these conditions andimproved screening overall; however,universal screening still has not beenachieved. AAP surveys ofpediatricians report screening ratesof 23% in 2002, 45% in 2009, and63% in 2016.20,21 Pediatricians havereported difficulties in incorporatingmultiple new guidelines for relatedconditions into their practices22 andcontinue to report time limitationsand inadequate payment as barriersto implementation.21

Although there are similarities amongrecommended screening strategiesfor delays and disabilities in cognitivedisorders, motor disorders, languagedisorders, autism, and social-emotional and behavioral disorders,there are also substantive differencesin their timing, measurement, andimplications for intervention. Thus,

this revision of the 2006 policystatement describes only the firstcategory. Future reports will providedetailed recommendations regardingscreening for ASD and social-emotional and behavioral disorders.The algorithm is intended to serve asa model for the refinement ofa universal system of screening of allchildren in the primary care setting,as illustrated in Fig 1.

This universal system would includethe wide range ofneurodevelopmental and behavioralconditions that affect the early andlong-term development andachievement of children. Theseconditions include ASD; languagedisorders; and deafness or hard-of-hearing, also referred to as deafness,hearing loss (InternationalClassification of Diseases, 10thRevision codes H91.90 throughH91.93), or hearing impairment (theIndividuals With DisabilitiesEducation Act [IDEA])23; visiondisorders; neuromotor conditions(such as cerebral palsy);neuromuscular disorders (such asDuchenne muscular dystrophy);intellectual and learning disabilities;and behavioral conditions (such asADHD). At the same time, certainconditions have high rates of co-occurring developmental orbehavioral disorders (eg, childrenborn preterm or with other perinatalcomplications and children withcomplex congenital heart disease,sickle cell disease, intrauterinealcohol exposure, lead toxicity,congenital infections, and otherchronic health conditions). Especiallyvulnerable to developmental and/orbehavioral problems are thosenegatively affected by the socialdeterminants of health and otheradverse childhood or familyexperiences such as children inpoverty24; children exposed toracism25; and children experiencingtoxic stress, including exposure toabuse, neglect, parental mentalillness, parental drug or alcohol use,

* Developmental screening has traditionally beenrecommended at the 24-month well-child visit, andsince 2006, has been recommended at the 30-month visit. Screening for ASD is stillrecommended at the 18- and 24-month visits.

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caregiver depression, and foster care.Screening principles being used indevelopmental surveillance andscreening of children without knowndevelopmental risks can be applieduniversally, including use in theidentification of developmental andbehavioral conditions in children withchronic health conditions.Additionally, given the importance ofcoordinated patient- and family-centered care in pediatrics, familiesshould be engaged as collaborativepartners in developmental screeningand surveillance practices. The act ofscreening itself provides engagementconversations and buildsrelationships with families. Thealgorithm and discussion that followcan be used to guide pediatric healthcare professionals through thesurveillance and screening processfor the early identification ofdevelopmental disorders, includingautism; it is important to note thatthis algorithm is focused on childrenwho do not have already identifiedrisks or developmental problems.

Although this clinical report isfocused on children ages 0 to 5 years,these recommendations may beconsidered a minimum and are not

intended to be prescriptive. Nationaland international groups focused onyoung children concur that earlychildhood spans ages 0 to 8 years andendorse screening beyond age3 years. The US Administration forFamilies, Office of Planning, Researchand Evaluation26 states that to beeffective, screening should begin earlyand be repeated through earlychildhood. Therefore, it is argued thatdevelopmental screening may need tobe more frequent to optimize theopportunities for detection of riskand connection to intervention.

NOTE ON TERMINOLOGY

As in the previous policy statement,clear distinctions are drawn withinthe context of this document among(1) surveillance, the process ofrecognizing children who may be atrisk for developmental delays; (2)screening, the use of standardizedtools to identify and refine thatrecognized risk; and (3) evaluation,a complex process to identify specificdevelopmental disorders that affecta child. “Developmental disorder” and“developmental disability” refer toa childhood mental or physicalimpairment or combination of mental

and physical impairments that resultin substantial functional limitations inmajor life activities.27

THE ALGORITHM

The algorithm (Fig 2) presents stepsfor screening a patient withoutidentified risks for developmentalproblems at a health supervision visit.

Step 1: Patient Without IdentifiedRisks or Developmental ProblemsArrives for Health Supervision Visit

A parent’s or professional’sdevelopmental concerns should beaddressed by the pediatric healthcare professional as part ofdevelopmental surveillance at eachpediatric health supervision visitthroughout the first 5 years of life, asoutlined in the AAP Bright Futures,Fourth Edition and related nationalhealth promotion and preventioninitiative.16,17 In multiple studies,researchers have shown thatdevelopmental disorders are detectedat low rates when physicians rely onjudgment alone.28 Includingdevelopmental screening tests attargeted ages enhances the precisionof the developmental surveillanceprocess.29

The recommended ages fordevelopmental screening at thehealth supervision visit are a startingpoint for children who are withoutknown identified risks and are notsuspected of having a developmentalconcern. Because development isdynamic in nature and surveillancehas limits, periodic screening witha validated instrument should occurso that a developmental concern notdetected by surveillance or an earlierscreening can be detected bysubsequent screening. Usinga validated developmental screeningtest at the 9-, 18-, and 30-month visitsis outlined in Bright Futures, FourthEdition.16,17 Developmentalsurveillance should continue throughchildhood, including surveillance atthe 4- or 5-year visit as a childprepares to enter elementary school.

FIGURE 1Early childhood screening for the identification of neurodevelopmental disorders and behavioral andemotional problems. (Content with an asterisk corresponds to current AAP guidance, using broadcategories. This figure may not be inclusive of all specific developmental and behavioral disorders.)

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Any time that parents, professionals,or others involved in the care of thechild raise concerns duringsurveillance, it is appropriate toperform additional developmentalscreens using validated tests. Thesescreenings should be recognizedseparately, with appropriate coding,billing, and payment and with theadditional cost acknowledged incapitated expectation (seeSupplemental Information).

Given that developmental andbehavioral risks increase with age,a child identified with risks orconcerns may merit at least annual

formal screening if concerns continueto be identified through surveillance.

Step 2: Is This a 9-, 18-, 24-, or30-Month Visit?

All children should receive periodicdevelopmental screening usinga standardized test. In the absence ofestablished risk factors or parental orprovider concerns, a generaldevelopmental screen continues to berecommended at the 9-, 18-, and 30-month visits. Screening for behavioraland emotional problems isrecommended at the same timepoints, at a minimum.5 In addition,

screening for ASD is recommended atthe 18- and 24-month visits.30

In addition, to identify problems notpreviously recognized in earlierscreenings and to identify issues withregard to developmental skillsnecessary for school readiness,31

surveillance, with close attention tothese developmental skills necessaryfor school readiness, should beperformed at the 4- or 5-year visit,with screening performed whenconcerns are noted. Additionalinformation about the pediatrician’srole in promoting school readiness, aswell as developmental surveillance

FIGURE 2Algorithm for screening a patient without identified risks for developmental problems at a health supervision visit. Numbers and headings refer to stepsin the algorithm. aTo identify problems not previously recognized during earlier screenings, clinicians should pay particular attention to developmentalsurveillance at the age 4- or 5-year visit, before entering kindergarten. Developmental surveillance should continue throughout childhood. bScreeninginstruments may be administered through a previsit process initiated by the practice or by the family. cProviders should create methods in their recordsystem (paper or electronic) to ensure that these facts are visible to clinicians in future visits and in the appointment scheduling process. CK, creatinekinase.


https://pediatrics.aappublications.org/lookup/suppl/doi:10.1542/peds.2019-3449/-/DCSupplemental/

for school readiness, can be found inthe AAP policy statement, “ThePediatrician’s Role in OptimizingSchool Readiness.”31 Given the lack ofstrong evidence validating screeningat the 4- to 5-year visit, universalscreening is not presentlyrecommended as part of theperiodicity schedule.

Step 3: Administer Screening Test

The administration of a brief,standardized screening test helpsidentify children at risk fora developmental disorder. Well-validated screening tests can becompleted by parents and scored byoffice staff. The pediatric health careprofessional interprets the screeningresults.

Developmental screening does notresult in a diagnosis but ratheridentifies areas in which a child’sdevelopment differs from same-agednorms. Repeated and regularscreening is more likely than a singlescreen to identify problems,especially in skills that develop later,such as language. Waiting untila young child misses a majormilestone may result in late ratherthan early recognition, increasingparental dissatisfaction and anxiety,and can deprive the child and familyof the benefits of early identificationand intervention.

A table of developmental screeningtests is included in this document(Supplemental Table 1), anda discussion of how to choose anappropriate screening test is includedin the section below entitled“Implementing the Algorithm.”

9- and 30-Month Visits: AdministerDevelopmental Screen

• A screening at the 9-month visitprovides an opportunity to attendto the child’s motor, visual, andhearing abilities. Earlycommunication skills also areemerging, and symptoms of ASD,such as lack of eye contact,orienting to name being called, or

pointing, may be recognizable inthe first year of life.32,33 Infants9 months of age who havea medical condition that increasesrisk for developmental disorders,such as a genetic condition orsignificant perinatal complications,should be referred to earlyintervention programs, if notpreviously referred. The 9-monthvisit also provides an educationalopportunity to inform parentsabout developmental screening andto encourage parents to attend tocommunication and early languageskills. Social and nonverbalcommunication, includingvocalizations and gestures, areimportant aspects of emergingcommunication that can beassessed at this visit. Although ASDis not diagnosed at this age, socialand emotional delays may qualifya child for early interventionprograms (eg, Part C, IDEA [0–36months])23,33 and provide valuablesupport to a family.

• The 30-month visit provides anadditional opportunity to identifymotor, language, and cognitiveproblems, including more subtledelays, and represents anotheropportunity to identify the childwith delays qualifying for earlyintervention services. An earlyintervention program also assiststhe child and family in transition toa school-based program as needed.

• As noted previously, this updatedclinical report recommendsdevelopmental surveillancethrough childhood, with particularattention to surveillance andadministration of a formalscreening test at the 4- or 5-yearvisit when developmental risks,concerns, or problems occur. As ageincreases, corresponding increasesin delays are seen.34,35 Withoutroutine screening, at least 50% ofchildren with developmental orbehavioral disorders are notdetected before kindergarten.36

Therefore, administration of

a standardized developmentalscreen at 4 years of age for childrenwith developmental concerns orrisks may improve detection andreferral of a child with previouslyunrecognized learning andattention disorders to the schoolsystem or other resources beforehis or her entry into kindergarten.Additional behavioral surveillancemay also help identify ADHDsymptoms at preschool age, whenbehavioral therapy and behavioralparent training may be especiallyhelpful. In addition, symptoms ofASD may become more apparentafter children become more verbaland are in the social milieu ofpreschool. Children 5 years of agewho are not yet in kindergartenshould receive continued closesurveillance followed by screening,if concerns arise.

18-Month Visit: AdministerDevelopmental Screen and ASD Screen

• A developmental screen isrecommended at the 18-monthvisit because delays in fine motor,communication, and languagedevelopment are often evident by18 months of age, as are previouslyundetected gross motor delays.Medical interventions for motordisorders have been shown to beeffective in children age 18 months,and effective early intervention fordelayed language development alsois available.37

• In addition to a generaldevelopmental screening test, anASD-specific screen should beadministered to all children at the18-month visit, as originallyrecommended in 2006.1 Earlysymptoms of ASD are often presentat this age, and effective earlyintervention strategies areavailable.38,39 Current evidencesupports screening for ASD at boththe 18- and 24-month visitsbecause ASD symptomatology maybe identified after 12 months ofage, with accurate screening by 18


months.40 However, a recentsystematic review of primary carescreening for ASD by the USPreventive Services Task Force(USPSTF) concluded thatinsufficient evidence existed onpotential benefits and harms ofsuch screening and that, therefore,it was unable to makea recommendation for or againstsuch screening.41 The USPSTF alsocalled for further research on thescreening tests, best ages forscreening, and best treatment ofthose identified.41 Screening bypediatric health care professionalscontinues to be recommended forthe early identification of andintervention for ASD, whileresearch continues.42 Children withASD demonstrate sleep, eating, andbehavioral challenges in earlychildhood, and the pediatric healthcare professional can help thefamily manage these issues directlyand through appropriate referralsand connect families to valuablepeer support organizations.

• Close surveillance and earlierscreening remains warranted ifa child is at high risk for ASD, forexample, if symptoms are present,the child has a sibling with ASD, thechild has a genetic condition withknown ASD risk, or the child hasa history of prematurity or prenatalexposures (such as toxins orinfection).43 Research shows thatbehaviors concerning for ASDemerge earlier than 18 months ofage.33 Therefore, incorporation ofsurveillance for “red flags” intohealth supervision visits beforeformal screening at the 18- and 24-month visits is recommended.30

(Note: the USPSTF did not addresshigh-risk individuals.)

24-Month Visit: Administer ASD Screen

• An ASD-specific screen shouldagain be administered to allchildren at the 24-month visit tofurther ensure the earlyidentification of children with ASD.

Other Ages: Additional Screening WithDevelopmental Concerns

If parents, pediatric health careprofessionals, or others involved inthe care of the child raise concerns atother times about the child’sdevelopment, it is appropriate toperform additional developmentalscreens using validated tests. Thisscreening may require a separate visitand should be conducted as soon aspossible.

Additionally, if a child has missed a 9-,18-, or 30-month visit,a developmental screen should beadministered at the next opportunity.

Step 4: Perform PhysicalExamination and RoutineDevelopmental Surveillance(Including Risk Factor Assessment)

When the results of the periodicscreening test are normal, thepediatric health care professional caninform the parents that, at this time,the child is at low risk fora developmental disorder andcontinue with other aspects of thehealth supervision visit.17 Normalscreening results provide anopportunity to focus ondevelopmental and behavioral healthpromotion.44

Developmental surveillance continuesto be defined with this report asa flexible, longitudinal, continuous,and cumulative process in whichknowledgeable health careprofessionals identify children whomay have developmentalproblems.1,45 Surveillance also can beuseful for determining appropriatereferrals, providing patient educationand family-centered care to supporthealthy development, and monitoringthe effects of developmental healthpromotion through early interventionand therapy. Because a greatbreadth and depth of information,including health and developmentalrisk factors and previous screeningresults, is accumulated acrossa child’s life through developmentalsurveillance, relevant developmental

information should be flagged andavailable for review before or ateach visit.

Developmental surveillance has 6components: (1) eliciting andattending to the parents’ concernsabout their child’s development; (2)obtaining, documenting, andmaintaining a developmental history;(3) making accurate and informedobservations of the child; (4)identifying risks and strengths andprotective factors; (5) maintaining anaccurate record of the process andfindings; and (6) sharing andobtaining opinions and findings withother professionals, such as child careproviders, home visitors, preschoolteachers, and developmentaltherapists, especially when concernsarise.45 In this updated report,additional emphasis is added tosurveillance on the obtaining andsharing of information withprofessionals from outside of themedical home.

Eliciting and Attending to the Parents’Concerns

By asking about parents’ concerns,the pediatric health care professionalcan elicit important informationabout the child’s development,learning, or behavior.46–48 A parentalso may bring the results ofscreening or evaluation by an outsideprofessional to the pediatrician’sattention, particularly if concerns arenoted.49 In such instances, thepediatric health care professionalshould seek information on the testperformed and its results for reviewand discussion with the family. Directdiscussion with the outsideprofessional about these concernsalso may be beneficial. Discussionswith the family or outsideprofessionals should be documentedin the medical record. The absenceof parental or professional concerndoes not preclude the possibility ofserious developmental delays,however.50


Obtaining, Documenting, andMaintaining a Developmental History

A developmental history is a vitalcomponent of any history takenduring a health supervision visit. Byasking questions about changesparents have seen in their child’sdevelopment since the last visit orobserving age-specific developmentalskill attainment, such as whether thechild is walking or pointing, thepediatric health care professionalmay identify delays or otherabnormalities in a child’sdevelopment that warrant furtherinvestigation.51 Developmentalmilestones and “red flag” resourcesare available, including the Centersfor Disease Control and Prevention’s(CDC) “Learn the Signs. Act Early”program Web site (http://www.cdc.gov/ncbddd/actearly/)13 and theAAP Screening Technical Assistanceand Resource Center Web site (www.aap.org/screening), to engagefamilies and other professionals ascollaborative partners in surveillance.

Making Accurate and InformedObservations of the Child

As trained and experiencedprofessionals, pediatricians and otherpediatric health care professionalshave the expertise and comparativeknowledge to identify developmentalconcerns. A careful physical anddevelopmental examination withinthe context of the health supervisionvisit is integral to developmentalsurveillance.52 Limited evidencesuggests observation of the parent-child interaction also may aid inidentifying children with delayeddevelopment.53

Identifying Risks and Strengths andProtective Factors

A risk assessment is an importantpart of developmental surveillance.Environmental,54 genetic,biological,52,55 social, anddemographic factors56 can increasea child’s risk for delays indevelopment. Multiple risk factors

can amplify each other.57,58 Childrenwith established risk factors may bereferred directly for developmentalevaluation and early interventionservices or may requiredevelopmental surveillance at more-frequent intervals than childrenwithout risk factors.

Some medical conditions can increasea child’s risk for developmentaldelays. These conditions includeperinatal complications (eg, pretermdelivery, low birth weight,intrauterine alcohol exposure, andhypoxic-ischemic encephalopathy),congenital and other neurologicconditions (eg, myelomeningocele,congenital brain anomalies, andepilepsy), complex congenital heartdisease, genetic conditions, and otherchronic conditions (eg, sickle celldisease).

Evidence is mounting about thenegative effects of early adversechildhood events, which may cause orlead to “toxic stress,” on brainarchitecture and child developmentand behavior.59 Poverty andassociated risk factors, such as foodinsecurity and caregiver depression,adds risk for developmental delays.Children who have these adverseexperiences would meet the federalMaternal and Child Health definitionof being at risk for having specialhealth care needs.60

Using the strength-based approach, asexemplified in the AAP Bright Futures,Fourth Edition,17 pediatric health careprofessionals should identifystrengths and protective factors aswell as risk factors in children’s lives.Strong connections within a loving,supportive family, along withopportunities to interact with otherchildren and grow in independence inan environment with appropriatestructure, are important assets ina child’s life. These factors, associatedwith resiliency in children, areimportant components of healthydevelopment.61,62 Similarly, strongsystems of community supports,

including local schools and public,private, and faith-basedorganizations, can play an importantrole in supporting the developmentand well-being of all children,including those with knowndevelopmental risks.

Maintaining an Accurate Record of theProcess and Findings

Medical records should document theoutcome of all surveillance andscreening activities during preventivecare visits. Additionally, specificactions taken or planned, such asscheduling an early follow-up visit,scheduling a visit to discussdevelopmental concerns more fully,or referrals to medical specialists orearly childhood programs andspecialists, also should be noted aspart of developmental surveillanceand screening. A record might containa table in which the date ofadministration and the results ofdevelopmental surveillance andformal screens are recorded inrelationship to the child’s age. Ifelectronic health records are used,developmental findings and plans canbe recorded, with automatic promptscreated for further action.

Sharing and Obtaining Opinions andFindings With Other Professionals

Although developmental surveillanceis performed in the pediatric medicalhome, the opinions and findingsobtained by the pediatric health careprofessional about the child’sdevelopment have importancebeyond this setting. In particular,a wide range of other professionalsmay be engaged with the young anddeveloping child and would benefitfrom conclusions reached by thepediatric health care professional’sregular ongoing developmentalsurveillance. These include child careproviders, home visitors, preschoolteachers, and developmentaltherapists. At the same time, somealso are likely making observations oftheir own of the child’s developmentand may be performing their own


http://www.cdc.gov/ncbddd/actearly/


http://www.aap.org/screening

http://www.aap.org/screening

developmental screening, aspromoted by the “Birth to 5: WatchMe Thrive!” program.49 Earlyintervention therapists also may beactively engaged with the child forboth evaluation and treatment ofdevelopmental concerns. Consistentwith the team-based approach,coordination of care with 2-waycommunication between the patient-and family-centered medical homeand entities outside the medical homeneeds to be systematic andconsistent.63 Any entity outside themedical home that provides screeningshould have a systematic approach tocommunication of screen results,both positive and negative, to themedical home. Communicationbetween a member of the medicalhome staff and these professionals onthe child’s development is, therefore,a critical part of surveillance toensure optimal care and coordinationof efforts and activities to optimizethe child’s development.64–66 Whenscreening or evaluation is performedby another professional, these resultsmust be shared and discussed withthe parent and the pediatric healthcare professional, including the testperformed and the results obtained.The “Birth to 5: Watch Me Thrive!”program offers a free screeningpassport to aid in sharing screeningresults. Direct communicationbetween the pediatric health careprofessional and the otherprofessional may be helpful.64 Itshould be noted that suchcommunication, particularlyelectronic communication, is subjectto Health Insurance Portability andAccountability Act of 1996 securityrequirements and must be protected.

This additional information mayincrease the complexity of the patientencounter. If the screen was recentlycompleted, interpretation,documentation, and related action arerecommended, with possible changesin the complexity of the encounterresulting in a higher-level visit. Anupdated screen may need to be

completed if months have elapsedsince the outside screening becauseof rapid changes in the child’sdevelopment. Pediatric health careprofessionals should not submit billsfor screening processes performedoutside the medical home, but thecharge for their services could reflectany applicable increase in complexityof medical decision-making.

Step 5: Does the Screening Suggesta Motor Concern?

If the screening results suggesta motor concern, a motor disorderevaluation should be conducted (seeStep 7: Perform Motor DisorderEvaluation).

Step 6: Is the Screening ResultConcerning?

If screening results are negative ornot concerning, the pediatric healthcare professional can proceed to Step10: Unaddressed Concern FromSurveillance? If there is anunaddressed concern, identify theconcern in the record system and setan early return flag before proceedingto Step 13. If there is no concern,proceed to Step 13: PerformRemainder of Health SupervisionVisit. If screening results areconcerning, a focused history andphysical examination should becompleted to identify any previouslyundetected medical conditions (seeStep 8: Perform Complete MedicalEvaluation below). The physicalexamination should target physicalstigmata suggestive of an underlyinggenetic abnormality. The neurologicexamination may suggest anunderlying neurologic condition. Thegeneral physical examination mayidentify undetected medicalconditions (eg, cardiac, renal,hematologic disease).

For a child who is determined by thepediatric health care professional tobe at increased risk fora developmental disorder on the basisof medical, environmental, or socialfactors, referral to early intervention

(under IDEA Part C23,67) or preschoolspecial education (under IDEA PartB)23,68 is recommended.

Reassurance has a role in the clinicalencounter but varies depending onthe progress and outcome ofdevelopmental surveillance andscreening. Reassurance should berooted in and reference the findingsof developmental surveillance andscreening. If, for example,developmental surveillance orscreening does not identify a concern,specific, simple, age-specificdevelopmental goals can beidentified, and parents can beencouraged to schedule follow-upappointments if the child is notattaining those goals. Discussion ofnormal screening results should alsoinclude promotion of developmentaland behavioral skills. In reassuringthe parents, the pediatric health careprofessional should emphasize theimportance of continual surveillanceand screening. Enrollment in EarlyHead Start or Head Start, child care,or early childhood education shouldbe considered, if appropriate.

Step 7: Perform Motor DisorderEvaluation

The child with motor concernsidentified on surveillance and/orscreening should undergoa comprehensive neurologicexamination. When tone is increased,brain imaging should be considered.The child with normal or decreasedtone should have laboratory testing ofcreatine kinase and thyroid-stimulating hormone.3 More detailedguidance can be found in the AAPclinical report “Motor Delays: EarlyIdentification and Evaluation.”3

Step 8: Perform Complete MedicalEvaluation

A medical diagnostic evaluationshould be undertaken to identify anunderlying etiology when the child’sdevelopment is concerning or a delayis confirmed. This evaluation shouldconsider biological, environmental,


and established risk factors fordelayed development.69–72 Audiologicevaluation should be performed forthe child with a developmentalconcern. Vision screening,15 review ofnewborn metabolic screening andhearing screening, growth review, andan update of environmental, medical,family, and social history foradditional risk factors are alsointegral.

Further medical evaluation will varywith the risk factors, and findingsmay suggest further genetic,neurologic, metabolic, or othermedical testing. The child withsuspected global developmental delayor intellectual disability should havelaboratory testing done, includingchromosomal microarray and fragileX testing.30 Metabolic testing shouldbe considered if indicated by historyand physical examination.73 Furthertesting may be indicated whena diagnosis is not established withinitial laboratory evaluation,including whole exome sequencingand gene panels. Brain imagingshould be considered in the presenceof abnormal neurologic examination,microcephaly, macrocephaly, or otherclinical indicators. The initial geneticworkup of the child with suspectedASD is evolving; currentrecommendations also includechromosomal microarray and fragileX testing.30 Consultation witha medical geneticist to help guide thegenetic workup should be considered.The pediatric health care professionalshould make additional specialtyreferrals as needed or whenadditional testing is warranted.

Identification of an etiology may giveparents a greater depth ofunderstanding of their child’sdisability. It also can affect variousaspects of treatment planning,including specific prognosticinformation, genetic counselingaround recurrence risk andheritability, specific medicaltreatments for improved health andfunction of the child, and therapeutic

intervention programming.74 Thisevaluation can be initiated bya general pediatrician or througha pediatric medical subspecialist,such as a neurodevelopmentalpediatrician, pediatric neurologist,developmental-behavioralpediatrician, pediatric geneticist, orpediatric physiatrist. The pediatrichealth care professional within themedical home should develop anexplicit comanagement plan withsubspecialist(s) and carecoordination with the family.

Step 9: Perform or Refer forDevelopmental Evaluation and Referto Early Intervention or EarlyChildhood Education

If screening results performed eitherin the primary care medical home orin the child’s child care or preschoolare concerning, the child should havea comprehensive developmentalevaluation performed. Thisevaluation may occur at a differentvisit or in a series of visits in theprimary care medical home or ina different setting by developmentalor other medical professionals. Thevisits should be scheduled as quicklyas possible, and professionals shouldcoordinate activities and sharefindings. Tracking of referrals shouldbe incorporated to ensure follow-up.

Developmental Evaluation

When developmental surveillance orscreening identifies a child as being athigh risk for a developmentaldisorder, diagnostic developmentalevaluation should be pursued. Thisevaluation will help to identify thespecific developmental disorder ordisorders affecting the child, thusproviding further prognosticinformation and allowing promptinitiation of specific and appropriateearly childhood therapeuticinterventions.

Children with neurodevelopmentaldisorders often have co-occurringareas of developmental or behavioralproblems.75–77 For example, a child

with ASD may have an intellectual orlearning disorder, ADHD, anxietydisorder, or a motor coordinationdisorder. Similarly, the child withcerebral palsy often has problems inthese same areas as well as in speechand language development.Identifying these disorders can leadto further evaluation and additionaltreatments. Pediatric medicalsubspecialists, such asneurodevelopmental pediatricians,developmental-behavioralpediatricians, pediatric neurologists,and pediatric physiatrists, as well asadvanced practice nurses, canperform the developmentaldiagnostic evaluation, as can otherearly childhood professionals, inconjunction with the child’s pediatrichealth care professional. These earlychildhood professionals include earlychildhood educators, childpsychologists, speech-languagepathologists, audiologists, socialworkers, physical therapists, oroccupational therapists, ideallyworking with families as part of aninterdisciplinary team and incoordination and communicationwith the medical home.

Early Developmental Intervention andEarly Childhood Education Services

Early intervention programs can beparticularly valuable when a child isfirst identified to be at high risk fordelayed development because theseprograms can provide evaluationservices and offer other services tothe child and family even before anevaluation is complete.68,78

Suggestions for effectivecollaboration and communicationbetween the patient- and family-centered medical home and earlychildhood education programs areoutlined in the AAP policy statement“Patient- and Family-Centered CareCoordination: A Framework forIntegrating Care for Children andYouth Across Multiple Systems” (seeSupplemental Table 1, CareCoordination Tools and OrganizationsSupporting Care Coordination).63


Early intervention and earlychildhood education programsinclude federally funded programs,such as IDEA Part B and C services,Early Head Start, and Head Start, butalso encompass quality preschoolsand parent education programs.These programs provide services thatcan include developmental therapies,service coordination, social workservices, assistance withtransportation and related costs,family training, counseling, and homevisits.23 The diagnosis of a specificdevelopmental disorder is notnecessary for an early interventionreferral to be made. Pediatric healthcare professionals should realize thata community-based earlyintervention evaluation may notaddress children with specificmedical risks, and furtherdevelopmental and medicalevaluation will often be necessary forchildren with established delays. TheCDC provides a list of earlyintervention contact information forUS states and territories.67 Trackingof referrals and good communicationwith the families should beincorporated to ensure follow-up.This has been found to beproblematic in some systems inwhich a minority of familiesultimately connect with earlyintervention programs, are evaluated,and receive services.79

Step 10: Unaddressed Concern FromSurveillance?

If concerns were raised duringdevelopmental surveillance (see Step4: Perform Physical Examination andRoutine Developmental Surveillance),but a disorder or condition was notidentified, the pediatric health careprofessional should document theconcern in the practice’s recordsystem (see Step 11: Identify Concernin Record System) and continue tomonitor the child’s developmentalprogress. An early return visit isrecommended to provide additionaldevelopmental surveillance (see Step12: Set Early Return Flag). Likewise, if

concerns were raised duringdevelopmental surveillance (Step 4)but developmental screening wasunable to be completed, the concernshould be noted in the record system(Step 11) and flagged for an earlyreturn visit (Step 12), and the returnvisit should be held as soon aspossible. If concerns are significant,then direct referral to earlyintervention is appropriate.

Step 13: Perform Remainder ofHealth Supervision Visit

When the results of the periodicscreening test are normal (Steps 4and 6), the pediatric health careprofessional can inform the parentsthat at this time, the child is at lowrisk for a developmental disorder, andcontinue with other aspects of thepreventive visit.17 Discussion ofnormal screening results provides anopportunity to focus ondevelopmental and behavioralpromotion using a strengths-basedapproach.

If developmental surveillance did notidentify a concern and the child wasnot at high risk for or identified witha developmental or behavioraldisorder or a chronic healthcondition, the pediatric health careprofessional should schedule the nexthealth supervision visit aftercompleting the examination and visit.

Steps 14 and 15: DevelopmentalDiagnosis Established? and InitiateChronic Condition Management

When a developmental disorder hasbeen diagnosed in a child, that childmeets the criteria for a child withspecial health care needs.60 The childshould be identified by the medicalhome for appropriate chroniccondition management and regularmonitoring and entered into thepractice’s registry of children andyouth with special health careneeds.60

The child may be assigned a carecoordinator from the practice or fromthe community who will work with

the family to ensure that all neededservices can be accessed. Proactivecare planning is needed, and routinefollow-up with the medical homebetween health supervision visitsmay be warranted to assess progressand minimize unmet family needs.

The child health professional shouldactively participate in all carecoordination activities for childrenwho have complex health conditionsin addition to developmentalproblems. Decisions regardingappropriate therapies and their scopeand intensity should be determined inconsultation with the child’s family,therapists, and educators (includingearly intervention or school-basedprograms) and should be based onknowledge of the scientific evidencefor their use.

Children with establisheddevelopmental disorders oftenbenefit from referral to community-based family support services, such asrespite care, parent-to-parentprograms, Parent TrainingInformation Centers (http://www.parentcenterhub.org/find-your-center), and advocacy organizations.Some children may qualify foradditional benefits, such asSupplemental Security Income, publicinsurance, waiver programs, and stateprograms for children and youth withspecial health care needs (Title VMaternal and Child Health BlockGrant Programs).80 Parentorganizations, such as FamilyVoices,81 Family-to-Family HealthInformation Centers,82 and condition-specific associations, can provideparents with information and supportand can provide an opportunity foradvocacy.

IMPLEMENTING THE ALGORITHM

Choosing Developmental ScreeningTests

No single screening test isappropriate for all children of all ages.Currently available screening testsvary from broad general


http://www.parentcenterhub.org/find-your-center



developmental screening tests tothose screening for specificconditions, such as ASD, and othersthat focus on specific areas ofdevelopment, such as communicationskills. Broad screening tests aredesigned to address alldevelopmental domains, includingfine and gross motor development,language and communication,cognitive development, adaptivedevelopment, and social-emotionaldevelopment. Their psychometricproperties vary in characteristics,such as their standardization, thecomparison group used fordetermining sensitivity andspecificity, and population risk status.Screening tests also need to beculturally and linguistically sensitive.

Many screening tests are available,and the choice of which test to usedepends on the population beingscreened, the types of problems beingscreened for in that population,administration and scoring time, anyadministration training time, the costof the test, ease of fit into practiceworkflow, and the possibilities foradequate payment.

Screening tests should be bothreliable and valid, with goodsensitivity and specificity. Positivepredictive value (PPV) and negativepredictive value (NPV) must also beconsidered. A test that incorrectlyidentifies a child as delayed willresult in overreferrals. A test thatincorrectly identifies a child astypically developing will result inunderreferrals. For developmentalscreening tests, scoring systems mustbe developed that minimize under-and overreferrals. Trade-offs betweensensitivity and specificity occur whendevising these scoring systems.83 Allindices (sensitivity, specificity, PPV,and NPV) are dependent on the goldstandard used in the clinicalevaluation and would vary asa function of the clinical measure(s)used and the cutoff selected (eg, –1 to1.5 SD). Overidentification of childrenby using standardized screening tests

may indicate that this group ofchildren includes some with below-average development and/orsignificant psychosocial risk factors.84

These children may benefit fromother community programs tosupport the family and child as wellas closer monitoring of theirdevelopment by their families,pediatric health care professionals,and teachers or caregivers.Combining developmentalsurveillance and periodic screeningincreases the opportunity foridentification of undetected delays inearly development (Text Box 1).

A list of developmental screeningtests and their psychometric testingproperties is included in thisdocument (Supplemental Table 1).These screening tests, which arefocused on parent-completed tools,have acceptable psychometricproperties. The list is not exhaustive,and other standardized, publishedtests are available. Additional testsare under development. Pediatrichealth care professionals areencouraged to familiarize themselveswith a variety of screening tests andchoose those that best fit theirpopulations, practice needs, and skill

level. Given the continual evolution ofsuch screening tests, establishinga system for annual review of currentand newly available screening testsand the dissemination of the resultswould be useful to provide guidanceto pediatric health care and otherprofessionals on the validity ofcurrently available screening tests foruse in the primary caremedical home.

Incorporating Surveillance andScreening in the Medical Home

Incorporating developmentalsurveillance and screening into thepediatric office setting has beensuccessfully achieved through the useof a “whole-office,” team-basedapproach. Implementationprojects9,11,85–92 have demonstratedsuccess with the pediatric health careprofessional or clinical team leadingthe office team in integrating thepractice into the clinic flow. Theprocess may begin in the child’s homeor at office visit registration andcontinue through the child’s visit withthe pediatric health care professionalin the medical office or clinic room.With the assistance of office staff,parents can complete parent-reportpaper or electronic developmental

TEXT BOX 1 DEVELOPMENTAL SCREENING TEST PROPERTIES

Developmental Screening Test PropertiesReliability: ability of a test to produce consistent resultsValidity: ability of a developmental screening test to discriminate between a child at

a determined level of risk for delay (ie, high, moderate) from the rest of the population (ie,low risk)Sensitivity: accuracy of the test in identifying delayed development. Those incorrectly

identified as typically developing by the test are false-negativesSpecificity: accuracy of the test in identifying children who are not delayed. Those

incorrectly identified as delayed by the test are false-positivesPPV: the proportion of children with a positive test result who are truly delayed; the

lower the prevalence or base rate of the disorder, the lower the PPVNPV: the proportion of children with negative test results who do not have

developmental delays; this is also influenced by the prevalence of the disorderPrevalence rate: No. children in population with a disorder, measured at a given timeBase rate: rate of a given disorderGeneral screening test: a test that evaluates multiple areas of developmentDomain-specific screening test: a test that evaluates one area or domain of development

(eg, motor or language)Disorder-specific screening test: a test aimed at identifying a specific developmental

disorder (eg, ASD)


surveillance and screening formseither before the office visit or withinthe medical office itself. A qualityimprovement approach may be themost effective means to buildsurveillance and screening elementsinto the process of care.93 In additionto the use of office staff fordistribution of surveillance orscreening tests to families, teammembers can help with surveillancethrough observation of behaviors,interactions, and language. Whena concern has been identified, office-based procedures can be used toschedule preventive care or follow-upvisits, flag children with establishedrisk factors, and help families withreferrals to early intervention,developmental specialists, andpediatric medical subspecialists asneeded. With the introduction ofdevelopmental screening to child careand early childhood programs, officestaff also can serve as links betweenthe family, the programs, and thechild’s medical home. Nonphysicianstaff also may score developmentalscreening tests, with interpretationand discussion with the family by thepediatric health care professional.

Since the publication of the 2006policy statement, many local, state,and national initiatives have beenused to increase developmentalsurveillance and screening practicesin pediatric clinical programs. Theresults include major increases inscreening rates, often with a majorityof children screened.9,21,85–92

However, in one study, rates ofscreening in family medicinepractices for ASD have been reportedto be lower.94 Feasibility andeffectiveness of parent-reportscreening tools also have beenverified.9,21,86,88 However, despite thesuccess of screening, a few studieshave shown that rates of referral toearly intervention were good but notuniversal, and referrals to specialistswere low.9,77,86,89,95–97 Establishingan effective and efficient partnershipwith early childhood professionals is

an important ingredient of successfulcare coordination for children withinthe medical home.63 The federalgovernment is supporting thesepartnerships through its “Birth to 5:Watch Me Thrive!” program,49 whichis particularly centered on universaldevelopmental and behavioralscreening for children across settings.The partnership includes early careand education providers, earlyintervention service and earlychildhood special educationproviders, child welfare professionals,home visitors, behavioral healthproviders, housing and homelessshelter providers, as well as thecommunity and the family. It is builton shared interest in thedevelopmental outcomes of childrenand recognition of the different skillsets of child health professionals andeducators.

Whenever possible, communitiesshould attempt to coordinateresources; this is especially true inpreventing delays in care orunnecessary duplication of service.National initiatives that are beingimplemented to address the low rateof early detection of developmentaldisorders, much within the context ofsystem-building, also address theproblem of successive fall-offbetween early detection, referral, andinitiation of services. TheCollaborative Improvement andInnovation Network initiatives98

include quality improvement projects,home visiting programs, andscreening at child care facilities, bothpublic (eg, Head Start, Early HeadStart) and private. TheseCollaborative Improvement andInnovation Network initiatives haveevolved from an initial focus onscreening to a comprehensive processof engaging families as partners,interpreting screening results in thecontext of the family, ensuringreferral for comprehensiveassessment and intervention, andensuring linkage to services. Use ofa computer-based decision support

system built into an electronic healthrecord system shows promise asa strategy for increasing screening aswell as referral and tracking.99

Electronic referral systems have alsobeen suggested.79

SUMMARY

The early identification of youngchildren with developmentaldisabilities can be achieved throughthe combined processes ofdevelopmental surveillance anddevelopmental screening in thepatient- and family-centered medicalhome. Developmental surveillanceshould be a component of everyhealth supervision visit throughdiscussion with a child’s parent, withincorporation of information fromother child care professionals whenappropriate. Screening should beimplemented through the use ofstandardized developmentalscreening tests with all children at the9-, 18-, and 30-month visits and whensuch surveillance identifies concernsabout a child’s development.Implementation of screening can beperformed under the direction of thepediatric health care professionalthrough other clinic or office staff.Children with known high-riskconditions should have closedevelopmental monitoring andintervention, as needed. A child withmotor delay also should undergocareful physical examination and havespecific laboratory testing performedfor treatable neurologic disorders.ASD screening should be performedsimilarly to general developmentalscreening using an ASD-specificscreening test at the 18- and 24-month visits until the time thataccurate measures are validated forother ages.

When a child has a concerningscreening result on developmentalscreening, further developmental andmedical evaluations to identify thespecific developmental disorders andrelated medical problems are


warranted. In addition, children whohave concerning screening results fordevelopmental problems should bereferred to early intervention andearly childhood services andscheduled for earlier return visits toincrease developmental surveillance.

Children in whom a developmentaldisorder is diagnosed may beconsidered as children with specialhealth care needs, and chroniccondition management for thesechildren should be initiated, aswarranted.

CLINICAL GUIDANCE FORDEVELOPMENTAL SURVEILLANCE ANDSCREENING

For the Medical Home

1. Perform developmentalsurveillance for the child at everyhealth supervision visit fromearly childhood throughadolescence, and ensure thatsuch surveillance evaluates thechild comprehensively.

2. Establish working relationshipsand dialogue with local child careprofessionals, early childhoodtherapists and educators, homevisitors, and other earlychildhood professionals forongoing developmentalsurveillance and discussion ofa child’s screening results in themedical home or elsewhere.

3. Consider direct referral of thechild to early intervention orpreschool special education forperformance of comprehensivedevelopmental and medicalevaluations when the child isdetermined to be at increasedrisk for a developmental disorderon the basis of medical,environmental, or social factorsor when surveillance raisessignificant concerns for delay.

4. Administer a standardizeddevelopmental screening test forall children at the 9-, 18-, and 30-month visits and for those whose

surveillance yields concernsabout delayed or disordereddevelopment. Screening thosewith concerns observed onsurveillance should especially benoted in children seen at the 4-or 5-year visits, at whichsurveillance may identifyconcerns not previously notedand that may be of importance oninitiation of kindergarten orelementary school.

5. Administer a standardized ASDscreening test for children at the18- and 24-month visits and atany time for those whosesurveillance yields concernsabout delayed or disorderedsocial development.

6. Undertake a medical diagnosticevaluation of a child whendevelopment is concerning toidentify an underlying etiologyand to provide related counselingand treatment.

7. Schedule early return visits forcontinued close surveillance ofchildren whose surveillanceraises concerns that are notconfirmed by a developmentalscreening test. Suchdevelopmental concerns mayinclude those of the parent, thepediatric health care professional,and other medical, educational, orearly intervention professionalsas well as known high-riskmedical or social risk factors.

8. Refer the child for whomscreening results are concerningto early intervention and earlychildhood programs and initiatemedical workup, if indicated.

9. Refer the child for whomscreening results are concerningfor further developmentalevaluation to identify a specificdevelopmental disorder.

10. Initiate a program of chroniccondition management for anychild identified witha developmental disorder.

11. Establish linkages andcollaborations with state and localcommunity and governmentprograms, services, and resourcesfor assisting the child in need ofspecial services or assistance.63

12. Document all surveillance,screening, evaluation, andreferral activities in the child’shealth record.

13. Family support services (eg, localand national Family Voicesorganizations [www.familyvoices.org], Parent to Parent USA, state-based Family-to-Family HealthInformation Centers, and otherspecific programs) should beoffered to families of childrenidentified with special health careneeds, and assistance should beprovided to access these services.

14. Quality improvement modelsmay be helpful to providers inintegrating surveillance andscreening into office proceduresand for monitoring theireffectiveness and outcomes.

For Policy and Advocacy

1. Identify and address barriers toscreening in the medical home(such as payment, professionaland staff education, and officeworkflow) to achieve universalscreening of all children duringearly childhood.

2. Provide appropriate payment fordevelopmental screening, testing,evaluation, and treatment. Paymentfor these separately identifiableand reportable services should notbe bundled into the preventive carevisit or any other office visit.Payment for follow-up visits tomonitor progress and outcomesshould also be provided.

3. Provide payment for chroniccondition management in themedical home for childrenidentified with a developmentaldisorder to address the child’songoing medical, social, anddevelopmental needs and to


http://www.familyvoices.org

http://www.familyvoices.org

identify associated and addressnewly associated conditionsand needs.

4. Continue current unified nationalefforts to increase early screeningand detection rates across healthcare, education, and social servicesectors with refinement andcoordination among entities(including the professionalassociations such as the AAP,American Academy of FamilyPhysicians, American Academy ofPhysician Assistants, NationalAssociation of Pediatric NursePractitioners, and the Associationof University Centers on Disabilitiesand federal agencies such asAdministration for Children andFamilies Office of Head Start andOffice of Child Care, CDC, and theMaternal and Child Health Bureauand Health Resources and ServicesAdministration). Support for theseefforts should continue with a focuson integrated systems for earlydetection and care coordination towork in a timely, effective way.100

5. Guidance on specific ages forbehavioral screening should bedeveloped and integrated withdevelopmental and ASD screening,given the close interrelationship ofdevelopment and behavior andcommon coexistence of problemsin both domains.

For Research and Development

1. Encourage ongoing investigationaround screening and referralrates directed to the goal ofuniversal screening of all children,with related referral into systems ofmedical and developmental care forthose identified with specificdevelopmental disorders. Obstaclesand barriers to referral and ongoingmanagement should be identified.

2. Support ongoing investigationdirected to the goal of earliestidentification of all children withdevelopmental disorders andreferral into specialty systems ofdevelopmental evaluation and

care, medical evaluation and care,and education.

3. Expand the evidence base for theeffectiveness of developmentalsurveillance activities, includingthe long-standing use and validityof developmental milestones forthis purpose.

4. Expand the evidence basecomparing the effectiveness ofdevelopmental surveillance,developmental screening, andtheir combination in theidentification of children withdevelopmental disorders.

5. Identify barriers that limitpediatric health care professionalsfrom conducting medical workupfor etiology and known associatedmedical conditions in childrenwith developmental concerns.

6. Develop information systems anddata-gathering tests to automateand operationalize the surveillanceand screening processesrecommended within this reportand its algorithm. These couldinclude integration anddocumentation into the child’selectronic health record ofdevelopmental surveillance andscreening of all children as well aschronic condition management ofthose children identified withdevelopmental disorders.

7. Support continued research on thepractice of developmental and ASDsurveillance and screening,including

examining the efficacy of surveillancefor early identification ofdevelopmental concerns in use atnonscreening visits;

examining the utility and validityof methods of surveillance andcurrent tools;

establishing the validity of bothgeneral developmental andASD-specific screening;

expanding the evidence base forthe use and effectiveness ofoptimal ages for recommended

developmental screening,including school-readinessscreening and associatedbehavioral screening; and

investigating the short- and long-term benefits of developmentalsurveillance and screening,given the current limitations ofthe evidence base.

Note that these recommendationsare consistent with the recentrecommendation from theUSPSTF42 in its review of ASDscreening. Although suchresearch continues,developmental surveillance andscreening by pediatric healthcare professionals in thepatient- and family-centeredmedical home continues to berecommended for the earlyidentification and interventionof children with developmentaldisorders, including ASD,reports of benefit from earlyand intensive intervention forASD, and the national legislativemandate for provision of earlyintervention and specialeducation services to childrenwith developmental disorders.

8. Unification of all current relatedscreenings is recommended,including early hearing screening,motor screening, behavioral andmental health screening, andneurodevelopmental screening inother health conditions (eg,prematurity and congenital heartdisease). This would be valuable,considering the multiplescreenings recommended for thewide range of health conditionsduring childhood. Such a visionand schedule would accommodateage and condition overlaps (suchas newborn, anemia, hearing,developmental screening), thecomplexities for theirimplementation in the pediatricoffice by pediatric health careprofessionals and staff, and theneed for families and communityproviders to understand the utility


of such screening. This integrationwould simplify the process ofscreening and would benefitaffected children, their families,and the pediatric health careprofessional.

LEAD AUTHORS

Paul H. Lipkin, MD, FAAPMichelle M. Macias, MD, FAAP

CONTRIBUTORS

Susan L. Hyman, MD, FAAPSusan E. Levy, MD, MPH, FAAPS. Andrew Spooner, MD, MS, FAAP

EDITOR

Anne B. Rodgers

COUNCIL ON CHILDREN WITH DISABILITIESEXECUTIVE COMMITTEE, 2019–2020

Dennis Z. Kuo, MD, MHS, FAAP, ChairpersonSusan Apkon, MD, FAAPLynn F. Davidson, MD, FAAPKathryn A. Ellerbeck, MD, MPH, FAAPJessica E.A. Foster, MD, MPH, FAAPSusan L. Hyman, MD, FAAPGarey H. Noritz, MD, FAAPMary O’Connor Leppert, MD, FAAPBarbara S. Saunders, DO, FAAPChristopher Stille, MD, MPH, FAAPLarry Yin, MD, MSPH, FAAP

PAST COUNCIL ON CHILDREN WITHDISABILITIES EXECUTIVE COMMITTEEMEMBERS

Timothy Brei, MD, FAAPBeth Ellen Davis, MD, MPH, FAAP

Susan E. Levy, MD, MPH, FAAPPaul H. Lipkin, MD, FAAPScott M. Myers, MD, FAAPKenneth Norwood, Jr, MD, FAAP, ImmediatePast Chairperson

LIAISONS

Cara Coleman, MPH, JD – Family VoicesMarie Mann, MD, MPH, FAAP – Maternal andChild Health BureauEdwin Simpser, MD, FAAP – Section onHome CarePeter J. Smith, MD, MA, FAAP – Section onDevelopmental and Behavioral PediatricsMarshalyn Yeargin-Allsopp, MD,FAAP – Centers for Disease Control andPrevention

STAFF

Alexandra Kuznetsov, RD [email protected]

SECTION ON DEVELOPMENTAL ANDBEHAVIORAL PEDIATRICS EXECUTIVECOMMITTEE, 2018–2019

Carol C. Weitzman, MD, FAAP, ChairpersonDavid Omer Childers, Jr, MD, FAAPJack M. Levine, MD, FAAPMyriam Peralta-Carcelen, MD, MPH, FAAPJennifer K. Poon, MD, FAAPPeter J. Smith, MD, MA, FAAPNathan Jon Blum, MD, FAAP, Immediate PastChairpersonJohn Ichiro Takayama, MD, MPH, FAAP,Website EditorRebecca Baum, MD, FAAP, Section Member,COPACFHRobert G. Voigt, MD, FAAP, Newsletter EditorCarolyn Bridgemohan, MD, FAAP, ProgramChairperson

PAST SECTION ON DEVELOPMENTAL ANDBEHAVIORAL PEDIATRICS EXECUTIVECOMMITTEE MEMBERS

Nerissa S. Bauer, MD, MPH, FAAPEdward Goldson, MD, FAAPMichelle M. Macias, MD, FAAPLaura Joan McGuinn, MD, FAAP

LIAISONS

Marilyn Augustyn, MD, FAAP – Society forDevelopmental and Behavioral PediatricsBeth Ellen Davis, MD, MPH, FAAP – Councilon Children With DisabilitiesAlice Meng, MD – Section on PediatricTraineesPamela C. High, MD, MS, FAAP – Formerliaison, Society for Developmental andBehavioral Pediatrics

STAFF

Carolyn McCarty, PhD [email protected] Paul, MPH [email protected]

ABBREVIATIONS

AAP: American Academy ofPediatrics

ADHD: attention-deficit/hyperac-tivity disorder

ASD: autism spectrum disorderCDC: Centers for Disease Control

and PreventionIDEA: Individuals With Disabilities

Education ActNPV: negative predictive valuePPV: positive predictive valueUSPSTF: US Preventive Services

Task Force

This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements

with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of

Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication.

DOI: https://doi.org/10.1542/peds.2019-3449

Address correspondence to Paul H. Lipkin, MD. Email: [email protected] and Michelle M. Macias, MD. Email: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2020 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.


https://doi.org/10.1542/peds.2019-3449

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DOI: 10.1542/peds.2019-3449 originally published online December 16, 2019; 2020;145;Pediatrics

PEDIATRICSDISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL Paul H. Lipkin, Michelle M. Macias and COUNCIL ON CHILDREN WITH

Developmental Disorders Through Developmental Surveillance and ScreeningPromoting Optimal Development: Identifying Infants and Young Children With

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DOI: 10.1542/peds.2019-3449 originally published online December 16, 2019; 2020;145;Pediatrics

PEDIATRICSDISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL Paul H. Lipkin, Michelle M. Macias and COUNCIL ON CHILDREN WITH

Developmental Disorders Through Developmental Surveillance and ScreeningPromoting Optimal Development: Identifying Infants and Young Children With

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