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BARRIERS SYSTEMIC BARRIERS TO THE CARE OF CHILDREN AND ADOLESCENTS WITH ADHD INTRODUCTION The AAP strives to improve the quality of care provided by PCCs through quality improvement initiatives including developing, promulgating, and regularly revising evidence-based clinical practice guidelines. The AAP has published a revision to its 2011 guideline on evaluating, diagnosing, and treating ADHD on the basis of the latest scientic evidence (see main article). This latest revision of the clinical practice guideline is accompanied by a PoCA (also found in the Supplemental Information), which outlines the applicable diagnostic and treatment processes needed to implement the guidelines. This section, which is a companion to the clinical guideline and PoCA, outlines common barriers that impede ADHD care and provides suggested strategies for clinicians seeking to improve care for children and adolescents with ADHD and work with other concerned public and private organizations, health care payers, government entities, state insurance regulators, and other stakeholders. ADHD is the most common childhood neurobehavioral disorder in the United States and the second most commonly diagnosed childhood condition after asthma. 246 The DSM-5 criteria dene 4 dimensions of ADHD: 1. ADHD/I (314.00 [F90.0]); 2. ADHD/HI (314.01 [F90.1]); 3. ADHD/C (314.01 [F90.2]); and 4. ADHD other specied and unspecied ADHD (314.01 [F90.8]). National survey data from 2016 reveal that 9.4% of 2- to 17-year-old US children received an ADHD diagnosis during childhood, and 8.4% currently have ADHD. 247 Prevalence estimates from community-based samples are somewhat higher, ranging from 8.7% to 15.5%. 9,10 Most children with ADHD (67%) had at least 1 other comorbidity, and 18% had 3 or more comorbidities, such as mental health disorders and/or learning disorders. These comorbidities increase the complexity of the diagnostic and treatment processes. 66 The majority of care for children and adolescents with ADHD is provided by the childs PCC, particularly when the ADHD is uncomplicated in nature. In addition, families typically have a high degree of condence and trust in pediatriciansability to provide this professional care. Because of the high prevalence of ADHD in children and adolescents, it is essential that PCCs, particularly pediatricians, be able to diagnose, treat, and coordinate this care or identify an appropriate clinician who can provide this needed care. Despite having a higher prevalence than other conditions that PCCs see and manage, such as urinary tract infections and sports injuries, ADHD is often viewed as different from other pediatric conditions and beyond the purview of primary care. In addition, several barriers to care hamper effective and timely diagnosis and treatment of these children and adolescents and must be addressed and corrected to achieve optimum outcomes for these children. 153 These barriers include the following: 1. limited access to care because of inadequate developmental- behavioral and mental health care training during residencies and other clinical training and shortages of consultant specialists and referral resources; 2. inadequate payment for needed services and payer coverage limitations for needed medications; 3. challenges in practice organization and stafng; and 4. fragmentation of care and resulting communication barriers. Addressing these barriers from a clinical and policy standpoint will enhance cliniciansability to provide high-quality care for children and adolescents who are being evaluated and/or treated for ADHD. Strategies for improvement in the delivery of care to patients with ADHD and their families are offered for consideration for practice and for advocacy. BARRIERS TO HIGH-QUALITY CARE FOR CHILDREN AND ADOLESCENTS WITH ADHD Multiple barriers exist in the primary medical care of children and adolescents that are impediments to excellent ADHD care. Limited Access to Care Because of Inadequate Developmental- Behavioral and Mental Health Care Training During Pediatric Residency and Other Clinical Training Programs and Shortages of Consultant Specialists and Referral Resources There is an overall lack of adequate pediatric residency and other training programs for pediatric clinicians on developmental- behavioral and mental health conditions, including ADHD. The current curriculum and the nature of pediatric training still focus on the diagnosis and treatment of inpatient and intensive care conditions despite the fact that many primary care pediatricians spend less and less time providing these services, which are increasingly managed by pediatric hospitalists and intensive care specialists. Pediatric and family medicine residents do not receive sufcient training in the diagnosis and treatment of developmental- behavioral and mental health conditions, including ADHD, despite the high frequency in which they will encounter these conditions in their practices. 152,248 FROM THE AMERICAN ACADEMY OF PEDIATRICS PEDIATRICS Volume 144, Number 4, October 2019 29

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Page 1: FROM THE AMERICAN ACADEMY OF PEDIATRICS · facilitate PCCs’ rapid access to behavioral and mental health expertise and consultation. Examples include integration (such as collaborative

BARRIERS

SYSTEMIC BARRIERS TO THE CARE OFCHILDREN AND ADOLESCENTS WITHADHD

INTRODUCTION

The AAP strives to improve thequality of care provided by PCCsthrough quality improvementinitiatives including developing,promulgating, and regularly revisingevidence-based clinical practiceguidelines. The AAP has publisheda revision to its 2011 guideline onevaluating, diagnosing, and treatingADHD on the basis of the latestscientific evidence (see main article).This latest revision of the clinicalpractice guideline is accompanied bya PoCA (also found in theSupplemental Information), whichoutlines the applicable diagnostic andtreatment processes needed toimplement the guidelines. This section,which is a companion to the clinicalguideline and PoCA, outlines commonbarriers that impede ADHD care andprovides suggested strategies forclinicians seeking to improve care forchildren and adolescents with ADHDand work with other concerned publicand private organizations, health carepayers, government entities, stateinsurance regulators, and otherstakeholders.

ADHD is the most common childhoodneurobehavioral disorder in theUnited States and the second mostcommonly diagnosed childhoodcondition after asthma.246 The DSM-5criteria define 4 dimensions of ADHD:

1. ADHD/I (314.00 [F90.0]);

2. ADHD/HI (314.01 [F90.1]);

3. ADHD/C (314.01 [F90.2]); and

4. ADHD other specified andunspecified ADHD (314.01[F90.8]).

National survey data from 2016 revealthat 9.4% of 2- to 17-year-old USchildren received an ADHD diagnosis

during childhood, and 8.4%currently have ADHD.247 Prevalenceestimates from community-basedsamples are somewhat higher,ranging from 8.7% to 15.5%.9,10 Mostchildren with ADHD (67%) had at least1 other comorbidity, and 18% had 3 ormore comorbidities, such as mentalhealth disorders and/or learningdisorders. These comorbidities increasethe complexity of the diagnostic andtreatment processes.66

The majority of care for children andadolescents with ADHD is providedby the child’s PCC, particularly whenthe ADHD is uncomplicated in nature.In addition, families typically havea high degree of confidence and trustin pediatricians’ ability to provide thisprofessional care. Because of thehigh prevalence of ADHD in childrenand adolescents, it is essential thatPCCs, particularly pediatricians, beable to diagnose, treat, andcoordinate this care or identify anappropriate clinician who can providethis needed care. Despite havinga higher prevalence than otherconditions that PCCs see and manage,such as urinary tract infections andsports injuries, ADHD is often viewed asdifferent from other pediatric conditionsand beyond the purview of primarycare. In addition, several barriers to carehamper effective and timely diagnosisand treatment of these children andadolescents and must be addressed andcorrected to achieve optimum outcomesfor these children.153 These barriersinclude the following:

1. limited access to care because ofinadequate developmental-behavioral and mental health caretraining during residencies andother clinical training andshortages of consultant specialistsand referral resources;

2. inadequate payment for neededservices and payer coveragelimitations for neededmedications;

3. challenges in practice organizationand staffing; and

4. fragmentation of care andresulting communication barriers.

Addressing these barriers froma clinical and policy standpoint willenhance clinicians’ ability toprovide high-quality care for childrenand adolescents who are beingevaluated and/or treated for ADHD.Strategies for improvement in thedelivery of care to patients withADHD and their families are offeredfor consideration for practice and foradvocacy.

BARRIERS TO HIGH-QUALITY CARE FORCHILDREN AND ADOLESCENTS WITHADHD

Multiple barriers exist in the primarymedical care of children andadolescents that are impediments toexcellent ADHD care.

Limited Access to Care Because ofInadequate Developmental-Behavioral and Mental Health CareTraining During Pediatric Residencyand Other Clinical Training Programsand Shortages of ConsultantSpecialists and Referral Resources

There is an overall lack of adequatepediatric residency and othertraining programs for pediatricclinicians on developmental-behavioral and mental healthconditions, including ADHD. Thecurrent curriculum and the nature ofpediatric training still focus on thediagnosis and treatment ofinpatient and intensive careconditions despite the fact that manyprimary care pediatricians spendless and less time providing theseservices, which are increasinglymanaged by pediatric hospitalists andintensive care specialists.Pediatric and family medicineresidents do not receive sufficienttraining in the diagnosis andtreatment of developmental-behavioral and mental healthconditions, including ADHD, despitethe high frequency in which they willencounter these conditions in theirpractices.152,248

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In addition, many experiencedpediatric clinicians believe thatgeneral pediatric and family medicineresidencies do not fully ensure thatclinicians who enter primary carepractice have the organizational toolsto develop, join, or function inmedical home settings and addresschronic developmental andbehavioral conditions like ADHD.152

The current funding of residency andother training programs for pediatricclinicians and the needs of hospitalstend to limit those aspects oftraining. The training challenges aresubsequently not sufficientlyaddressed by practicing pediatricand family medicine practitioners, inpart because of the limited numberand varying quality of continuingmedical education (CME)opportunities and qualityimprovement projects focused onmedical home models and/or thechronic care of developmental andbehavioral pediatric and mentalhealth conditions.

The lack of training is compoundedby the national shortage of child andadolescent psychiatrists anddevelopmental-behavioralpediatricians: the United States hasonly 8300 child psychiatrists249 and662 developmental-behavioralpediatricians.250 The additionaltraining required for child psychiatryand developmental-behavioralpediatrics certification increaseseducation time and costs yet results

in little or no return on thisinvestment in terms of increasedcompensation for these specialists.249

Given the high cost of medical schooland the increasing educational debtincurred by graduating medicalstudents, physicians lack a financialincentive to add the extra years oftraining required for thesespecialties.251 As a result, there areinsufficient numbers of mental healthprofessionals, including childpsychiatrists and developmental-behavioral pediatricians, to serve assubspecialty referral options and/orprovide PCCs with consultativesupport to comanage their patientseffectively.

The specialist shortage is exacerbatedby the geographically skeweddistribution of extant childpsychiatrists and developmental-behavioral pediatricians who areconcentrated in academic medicalcenters and urban environments.Almost three quarters (74%) of UScounties have no child and adolescentpsychiatrists; almost half (44%) donot even have any pediatricians.252 Asa result, many PCCs lack an adequatepool of pediatric behavioral andmental health specialists who canaccept referrals to treat complicatedpediatric ADHD patients and anadequate pool of behavioraltherapists to provide evidence-basedbehavioral interventions. The result isthat patients must often traveluntenable distances and endure long

waits to obtain these specialtyservices.

Suggested Strategies for Change toAddress Limited Access to Care:Policy-Oriented Strategies forChange

• Promote changes in pediatricand family medicine residencycurricula to devote more timeto developmental, behavioral,learning, and mental health issueswith a focus on prevention, earlydetection, assessment, diagnosis,and treatment. Changes in thenational and individual trainingprogram requirements and infunding of training shouldfoster practitioners’ understandingof the family perspective; promotecommunication skills, includingmotivational interviewing; andbolster understanding andreadiness in the use ofbehavioral interventions andmedication as treatment optionsfor ADHD.

• Emphasize teaching and practiceactivities within general pediatricresidencies and other clinicaltraining, so pediatricians and otherPCCs gain the skills and ability theyneed to function within a medicalhome setting.

• Support pediatric primary caremental health specialistcertification for advanced practiceregistered nurses through the

SUPPLEMENTAL TABLE 2 Core Symptoms of ADHD From the DSM-5

Inattention Dimension Hyperactivity-Impulsivity Dimension

Hyperactivity Impulsivity

Careless mistakes Fidgeting Blurting answers before questions completedDifficulty sustaining attention Unable to stay seated Difficulty awaiting turnSeems not to listen Moving excessively (restless) Interrupting and/or intruding on othersFails to finish tasks Difficulty engaging in leisure activities quietly —

Difficulty organizing “On the go” —

Avoids tasks requiring sustained attention Talking excessively —

Loses things — —

Easily distracted — —

Forgetful — —

Adapted from American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Association; 2000:59–60. —, notapplicable.

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Pediatric Nursing CertificationBoard to provide advanced practicecare to help meet evidence-basedneeds of children or adolescentswith ADHD.

• Encourage the development andmaintenance of affordableprograms to provide CME andother alternative posttraininglearning opportunities onbehavioral and developmentalhealth, including ADHD.These opportunities will helpstakeholders, including PCCs,mental health clinicians, andeducators, become morecomfortable in providingsuch services within themedical home and/or educationalsettings.

• Develop, implement, and supportcollaborative care models thatfacilitate PCCs’ rapid access tobehavioral and mental healthexpertise and consultation.Examples include integration(such as collaborative care orcolocation), on-call consultation,and support teams such as theMassachusetts Child PsychiatryAccess Program,253 the “ProjectTeach Initiative” of the New YorkState Department of MentalHealth,254 and Project Extensionfor Community HealthcareOutcomes, a collaborative model ofmedical education and caremanagement that can be targetedto pediatric mental health.255 Inaddition, federal funding hadprovided grants to18 states todevelop Child Psychiatry AccessPrograms through HealthResources and ServicesAdministration’s Pediatric MentalHealth Care Access Program.256,257

Promote incentives such as loanforgiveness to encouragemedical students to enter thefields of child and adolescentpsychiatry and developmental andbehavioral pediatrics, particularlyfor those who are willing to

practice in underservedcommunities.

• Expand posttraining opportunitiesto include postpediatric portalprograms, which providealternative ways to increasenumber of child and adolescentpsychiatrists.

Inadequate Payment for NeededServices and Payer CoverageLimitations for NeededMedications

Although proper diagnostic andprocedure codes currently exist forADHD care in pediatrics, effective andadequate third-party payment is notguaranteed for any coveredservices.258 In addition, manypayment mechanisms impede thedelivery of comprehensive ADHDcare. These impediments includerestrictions to medication treatmentchoices such as step therapy, previousapproval, narrow formularies, andfrequent formulary changes. Somepayers define ADHD as a “mentalhealth problem” and implementa “carve-out” health insurance benefitthat bars PCCs from participation.259

This designation results in denial ofcoverage for primary care ADHDservices. Some payers haverestrictive service and/or medicationapproval practices that preventpatients from receiving or continuingneeded care and treatment. Examplesinclude approval of only a limitednumber of specialist visits, limitedADHD medication options, mandatorystep therapy, frequent formularychanges resulting in clinicaldestabilization, and disproportionallyhigh out-of-pocket copays for mentalhealth care or psychotropicmedications.

Payments for mental health andcognitive services are frequentlylower than equivalents (by relativevalue unit measurement) paid forphysical health care services,particularly those entailing specificprocedures.258 Longer and morefrequent visits are often necessary to

successfully address ADHD, yet time-based billing yields lower paymentcompared to multiple shorter visits.These difficulties financially limita practice’s ability to provide theseneeded services. Payments for E/Mcodes for chronic care are ofteninsufficient to cover the staff andclinician time needed to provideadequate care. Furthermore, manypayers deny payment for the use ofrating scales, which are the currentlyrecommended method for monitoringADHD patients. The use of ratingscales takes both the PCC’s time andthe practice’s organizationalresources. Arbitrary denial ofpayment is a disincentive to theprovisions of this essential andappropriate service.

Finally, payers commonly decline topay or provide inadequate paymentfor care coordination services. Yet,office staff and clinicians are askedto spend large amounts ofuncompensated time on theseactivities, including communicatingwith parents, teachers, and otherstakeholders. Proposed new practicestructures such as accountable careorganizations (ACOs) are predicatedon value-based services and mayprovide new financial mechanisms tosupport expanded care coordinationservices. Originally implementedfor Medicare, all-payer ACO modelsare under development in manystates. To date, however, thespecifics of these ACO models havenot been delineated, and theireffectiveness has not yet beendocumented.260

The seemingly arbitrary and ever-changing standards for approval ofservices; the time-consuming natureof previous approval procedures; andrestrictive, opaque pharmacy rulescombine to create substantial barriersthat result in many PCCs declining tocare for children and adolescentswith ADHD.252 According to a recentAAP Periodic Survey of Fellows, 41%of pediatricians reported that“inadequate reimbursement is

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a major barrier to providing mentalhealth counseling.”258 Of note, 46%reported that they would beinterested in hiring mental healthclinicians in their practice “if paymentand financial resources were not anissue.”258

Payers’ practices regardingmedication approval also createchallenges for treating pediatricADHD. In conflict with best-practiceor evidence-based guidelines, payerscommonly favor 1 ADHD medicationand refuse to approve others, evenwhen the latter may be moreappropriate for a specific patient.Decisions seem to be made on cost,which at times can be variable.Certain drugs may be allowed onlyafter review processes; others arerefused for poorly delineated reasons.Reviewers of insurance denialappeals often lack pediatricexperience and are unfamiliar withthe effect of the patient’s coexistingcondition(s) or developmental stageon the medication choice. Steptherapy protocols that requirespecific medications at treatmentinitiation may require patients toundergo time-consuming treatmentfailures before an effective therapycan be started. Changes toformularies may force medicationchanges on patients whose ADHD hadbeen well-controlled, leading tomorbidity or delays in findingalternative covered medications thatmight be equally effective in restoringclinical control.

Similarly, payers may inappropriatelyinsist that a newer replacement drugbe used in a patient whose ADHD hasbeen well-controlled by anotherdrug of the same or similar class.The assumption that genericpsychoactive preparations are equalto brand-name compounds in efficacyand duration of action is not alwaysaccurate.261 Although genericsubstitution is generally appropriate,a change in a patient’s responsemay necessitate return to thenongeneric formulation. In addition,

because of the variation in coveredmedications across insurancecompanies, when a family changeshealth plans, clinicians have to spendmore time to clarify treatments andreduce family stress and theireconomic burden.

Suggested Strategies for Change toAddress Inadequate Payment andPayer Coverage Limitations: Policy-Oriented Strategies

• Revise payment systems to reflectthe time and cognitive effortrequired by primary care,developmental-behavioral, andmental health clinicians todiagnose, treat, and managepediatric ADHD and compensatethese services at levelsthat incentivize and supporttheir use.

• Support innovative partnershipsbetween payers and clinicians tofacilitate high-quality ADHD care.As new payment models areproposed, include input frompracticing clinicians to informinsurance plans’ understandingof the resources needed toprovide comprehensiveADHD care.

• Require that payers’ medicaldirectors who review pediatricADHD protocols and medicationformularies either have pediatricexpertise or seek such expertisebefore making decisions that affectthe management of pediatricpatients with ADHD.

• Advocate that health care payers’rules for approval ofdevelopmental-behavioral andmental health care services andmedications are consistent withbest-practice recommendationsbased on scientific evidence such asthe AAP ADHD guideline. Payersshould not use arbitrary step-basedmedication approval practices orforce changes to a patient’s stableand effective medication plans

because of cost-based formularychanges.

• Advocate for better monitoring bythe FDA of ADHD medicationgeneric formulations to verify theirequivalency to brand-namepreparations in terms of potencyand delivery.

• Partner with CHADD and otherparent support groups to helpadvocate for positive changes inpayers’ rules; these organizationsprovide a strong voice fromfamilies who face the challenges ona day-to-day basis.

Challenges in PracticeOrganization

ADHD is a chronic condition.Comprehensive ADHD care requiresadditional clinician time for complexvisits, consultation andcommunication with care teammembers, and extended staff time tocoordinate delivery of chronic care.Children and adolescents with ADHDhave a special health care conditionand should be cared for in a mannersimilar to that of other children andyouth with special health careneeds.262 Such care is ideallydelivered by practices that areestablished as patient- and family-centered medical homes. Yet, thenumber of patient- and family-centered medical homes isinsufficient to meet the needs ofmany children with ADHD and theirfamilies. Pediatricians and other PCCswho have not adopted a patient- andfamily-centered medical home modelmay benefit from the use of similarsystems to facilitate ADHDmanagement. For more information,see the recommendations anddescriptions from the AAP and theAmerican Academy of FamilyMedicine regarding medicalhomes.262

Caring for children and adolescentswith ADHD requires practices tomodify office systems to address theirpatients’ mental health care needs.Specifically, practices need to be

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familiar with local area mental healthreferral options, where available, andcommunicate these options tofamilies. Once a referral has beenmade, the office flow needs tosupport communication with otherADHD care team members.263 Otherteam members, especially those inmental health, need to formallycommunicate with the referringclinician in a bidirectional process.

Making a referral does not alwaysmean that the patient is able to accesscare, however. Practices need toconsider that many families facedifficulties in following through withreferrals for ADHD diagnosis andtreatment. These difficulties mayarise for a variety of reasons,including lack of insurance coverage,lengthy wait lists for mental healthproviders, transportation difficulties,reluctance to engage with anunfamiliar care system, culturalfactors, and/or the perceived stigmaof receiving mental health–specificservices.145,146,155,158

Many of these barriers can beaddressed by the integration ofmental health services withinprimary care practices and otherinnovative collaborative care models.These models can help increase theopportunities for families to receivecare in a familiar and accessiblelocation and provide a “warmhand off” of the patient into themental health arena. Theimplementation of these models canbe hindered by cost; collaborationwith mental health agencies may befruitful.

Another challenge is the difficulty indetermining which mental healthsubspecialists use evidence-basedtreatments for ADHD. Pediatriciansand other PCCs can increase thelikelihood that families receiveevidence-based services byestablishing a referral network ofclinicians who are known to useevidence-based practices andeducating parents about effective

psychosocial treatments for childrenand adolescents to help them bewise consumers. It is also importantto be cognizant of the fact that forsome families, accessing theseservices may present challenges,such as the need to take time offfrom work or cover anyprogram costs.

Finding professionals who useevidence-based treatments is of theutmost importance, because exposureto non–evidence-based treatmentshas the potential to harm patients inseveral ways. First, the treatment isless likely to be effective and may beharmful (eg, adverse events can anddo occur in psychosocialtreatments).264 Second, the effort andmoney spent on ineffective treatmentinterferes with the ability tomeaningfully engage in evidence-based treatments. Finally, whena treatment does not yield benefits,families are likely to becomedisillusioned with psychosocialtreatments generally, even those thatare evidence-based, decreasing thelikelihood of future engagement. Eachof these harms may place the child atgreater risk of problematic outcomesover time.

Suggested Strategies to AddressChallenges in Practice Organization

Clinician-Focused ImplementationStrategies

• Develop ADHD-specific officeworkflows, as detailed in thePreparing the Practice section ofthe PoCA (see SupplementalInformation).

• Ensure that the practice iswelcoming and inclusive to patientsand families of all backgrounds andcultures.

• Enable office systems to supportcommunication with parents,education professionals, andmental health specialists, possiblythrough electronic communicationsystems (discussed below).

• Consider office certification asa patient- and family-centeredmedical home.

• If certification as a patient- andfamily-centered medical home isnot feasible, implement medicalhome policies and procedures,including care conferences andmanagement. Explore caremanagement opportunities,including adequate resourcingand payment, with third-partypayers.

• Identify and establish relationshipswith mental health consultationand referral sources in thecommunity and withinregion, if available, and investigateintegration of services aswell as the resources tosupport them.

• Promote communication betweenADHD care team members byintegrating health andmental health services andusing collaborative caremodel treatments whenpossible.

• Be aware of the community mentalhealth crisis providers’ referralprocesses and be prepared toeducate families aboutevidence-based psychosocialtreatments for ADHD across thelife span.

Policy-Oriented Suggested Strategies

• Encourage efforts to support thedevelopment and maintenanceof patient- and family-centeredmedical homes or relatedsystems to enable patientswith chronic complex disordersto receive comprehensivecare.

• Support streamlined, coordinatedADHD care across systems byproviding incentives for theintegration of health and mentalhealth services and collaborativecare models.

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Fragmentation of Care and ResultingCommunication Barriers

Multiple team members provide carefor children and adolescents withADHD, including those in the fieldsof physical health, mental health,and education. Each of thesesystems has its own professionalstandards and terminologies,environments, and hierarchicalsystems. Moreover, they protectcommunication via different privacyrules: the Health InsurancePortability and Accountability Act(HIPAA)265 for the physical andmental health systems and theFamily Educational Rights andPrivacy Act (FERPA)266 for theeducation system. These factorscomplicate communication not onlywithin but also across these fields.The lack of communicationinterferes with clinicians’ abilities tomake accurate diagnoses of ADHDand co-occurring conditions,monitor progress in symptomreduction when providing treatment,identify patient resources, andcoordinate the most effectiveservices for children and adolescentswith ADHD.

Electronic systems can help addressthese communication barriers byfacilitating asynchronouscommunication among stakeholders.This is particularly useful fordisparate stakeholders, such asparents, teachers, and clinicians,who often cannot all be availablesimultaneously for a telephone orin-person conference. Electronicsystems can also facilitate the timelycompletion and submission ofstandardized ADHD ratingscales, which are the best tools toassess and treat the condition.267

Because implementation ofelectronic systems lies partiallywithin the PCC’s control,additional information is providedbelow on the strengthsand weaknesses of a variety ofsuch systems, includingtelemedicine.

Stand-alone Software Platforms andEHRs

Stand-alone software platforms andEHRs have the potential to improvecommunication and care coordinationamong ADHD care team members.Commercially available stand-alonesoftware platforms typically useelectronic survey interfaces (eitherWeb or mobile) to collect rating datafrom parents and teachers, usealgorithms to score the data, anddisplay the results cross-sectionallyor longitudinally for the clinician’sreview. Advantages of stand-aloneplatforms include the fact that theyare designed specifically for ADHDcare and can be accessed via theInternet through computers andmobile devices. Once implemented,these user-friendly systems allowparents, teachers, and practitionersfrom multiple disciplines orpractices to conveniently completerating scales remotely. Stand-aloneplatforms also offer the ability tocustomize rating scales and theirfrequency of use for individualpatients. Submitted data are storedautomatically in a database,mitigating the transcription errorsthat are often associated withmanual data entry. Data are availablefor clinical care, qualityimprovement, or research, includingquality metrics.

A substantial downside to stand-alone ADHD care systems is the lackof data integration into EHRs.Practitioners must log in to disparatesystems for different facets ofpatient care: the stand-alone systemto track ADHD symptoms and theEHR to track medications records,visit notes, and patient or familyphone calls. To achieve dataaccuracy in the 2 different systems,the practitioner must copymedication information from theEHR into the stand-alone system andADHD symptom and adverse effectratings from the stand-alonesystem into the EHR. In addition,stand-alone systems require

clinicians to log in before each visit toreview the relevant ADHD care data.Patients may use a variety of ADHDstand-alone tracking systems,requiring the PCC to rememberseveral accounts and passwords inaddition to his or her own office andhospital EHR systems, creating anadded burden that may reduceenthusiasm for such platforms.Finally, stand-alone systems typicallycharge fees to support themaintenance of servers,cybersecurity, and technical andcustomer support functionalities.

An issue over which the PCC has littlecontrol is the fact that otherstakeholders may use stand-alonesystems inconsistently. Parents(who may themselves have ADHD)must log in to the platform andcomplete the requisite ADHDrating scales. Teachers may berequired to log in and complete theevaluation process, often for severalstudents, on top of their otherobligations. The fact thatdifferent pediatricians may usedifferent systems, each with theirown log-in and interface, addsto the activity’s complexity,particularly for teachers who need toreport on multiple students toa variety of PCCs.

EHRs for ADHD Management

EHRs can be adapted to improve thetimely collection of parent andteacher ratings of ADHD symptoms,impairment, and medication adverseeffects. Some EHRs use an electronicsurvey functionality or patient portal,similar to that provided by ADHDcare stand-alone systems, to allowparents’ access to online rating scales.A clear advantage of these EHRsystems is that they increase theability to access documentation aboutan individual patient’s past treatmentmodalities and medications in thesame place as information abouthis or her ADHD symptoms.The functionality of these EHRs mayfacilitate other care-related

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activities, including evidence-baseddecision support, qualityimprovement efforts, and outcomesreporting.268

Despite these benefits, there arenumerous limitations to managingADHD care with EHRs. First, healthcare systems’ confidentiality barriersoften prevent teachers from enteringratings directly into the child’smedical record. The large numberand heterogeneity of EHR systemsand their lack of interoperability areadditional barriers to their use forADHD care.269 Even when institutionsuse the same vendor’s EHR,exchanging respective ADHDdocumentation among a variety ofclinicians and therapists is frequentlyimpossible.270 The inability to shareinformation and the lack ofinteroperability often results inincomplete information in the EHRabout a given patient’s interventions,symptoms, impairments, and adverseeffects over time. Systems for trackingand comparing these aspects ofa patient’s care are not standard formost EHR packages. The ability toconstruct templates that arecongruent with a clinician’s workflowmay be limited by the EHR itself.ADHD functionality must often becustom-built for each organization,a cumbersome, expensive, andlengthy process, resulting in lostproductivity, clinical effectiveness,and revenue.

General Issues With ADHD ElectronicTracking Systems

EHRs have been linked to increasedclinician stress. For this reason, it isimportant to consider the potentialfor added burden when either stand-alone or EHR-embedded systems areused to facilitate ADHD care.271

Although the use of electronic ADHDsystems to monitor patients remotelymay be advantageous, clinicians andpractices may not be equipped orstaffed to manage the burden ofadditional clinical information

arriving between visits (ie, intervisitdata).

Clinicians must also consider theliability associated with potentiallyactionable information that familiesmay report electronically withoutrealizing the information might not bereviewed in real time. Examples ofsuch liabilities include a severemedication adverse effect, free-textreport of suicidal ideation, andsudden deterioration in ADHDsymptoms and/or functioning. Inaddition, parents and teachers mayreceive numerous requests tocomplete rating scales, leading themto experience “survey fatigue” andignore the requests to complete thesescales. Conversely, they may forgethow to use the system if they engagewith it on an infrequent basis. Someparents or teachers may beuncomfortable using electronicsystems and within the medicalhome might prefer paper ratingscales, and others may not have readyaccess to electronic systems or theInternet.

Telemedicine for ADHD Management

Telemedicine is a new and rapidlygrowing technology that has thepotential, when properlyimplemented within the medicalhome, to expand access to care and toimprove clinicians’ ability tocommunicate with schools,consultants, care management teammembers, and especially patients andparents.213,272,273 Well-runtelemedicine programs offer somepromise as a way to deliver evidence-based psychosocial treatments,although few evidence-basedprograms have been tested viatelemental health trials.274,275

Telemedicine is one of thefoundations of the new advancedmedical home and offers advantagesas follows:

• offering communicationopportunities (either face-to-faceand synchronous as a conversationor asynchronous as messaging),

which can be prescheduled tominimize interruption of officeflow;

• enabling communication ona one-on-one basis or one-to-many basis (for conferencesituations);

• replacing repeated office visits forpatient follow-up and monitoring,which reduces time and the needfor patients to travel to the PCC’soffice;

• facilitating digital storage of thetelemedicine episode and itsincorporation into multiple EHRsystems as part of the patientrecord; and

• enhancing cooperation among allparties in the evaluation andtreatment processes.

Telemedicine has great potential butneeds to be properly implementedand integrated into the practiceworkflow to achieve maximumeffectiveness and flexibility. Althoughsome new state insurance regulationsmandate payment for telemedicineservices, such mandates have not yetbeen implemented in all states,limiting telemedicine’s utility. Finally,payment for services needs to includethe added cost of equipment and staffto provide them.

Suggested Strategies to AddressFragmentation of Care and ResultingCommunication Barriers

Clinician-Focused ImplementationStrategies

• Ensure the practice is aware of, andin compliance with, HIPAA andFERPA policies, as well asconfidentiality laws andcybersecurity safeguards thatimpact EHRs’ communication withschool personnel and parents.276

• Maintain open lines ofcommunication with all teammembers involved in the patient’sADHD care within the practicallimits of existing systems, time, andeconomic constraints. As noted,

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team members include teachers,other school personnel, clinicians,and mental health practitioners.This activity involves a team-basedapproach and agreeing ona communication method andprocess to track ADHDinterventions, symptoms,impairments, and adverse effectsover time. Communication can beaccomplished through a variety ofmeans, including electronicsystems, face-to-face meetings,conference calls, emails, and/or faxes.

• Consider using electroniccommunication via stand-aloneADHD management systemsand electronic portals, afterevaluating EHR interoperabilityand other administrativeconsiderations.

• Integrate electronic ADHD systemsinto the practice’s clinicalworkflow: decide who will reviewthe data and when, how actionableinformation will be flagged andtriaged, how information andrelated decision-making will bedocumented in the medicalrecord, etc.

• Set and clarify caregivers’expectations about the practice’sreview of information providedelectronically versus actionableinformation that should becommunicated directly byphone.

• Promote the implementation oftelemedicine for ADHDmanagement in states wherepayment for such services isestablished; ensure thetelemedicine system chosenis patient centered, HIPAA andFERPA compliant, and practiceenhancing.

Policy-Oriented Suggested Strategies

• Promote the development ofmechanisms for onlinecommunication to enhance ADHD

care collaboration, includingelectronic portals and stand-aloneADHD software systems, to serve ascommunication platforms forfamilies, health professionals,mental health professionals,and educators. Ideally, theseportals would be integrated withthe most commonly used EHRsystems.

• Advocate for regulations thatmandate a common standard ofinteroperability for certified EHRsystems. Interoperability facilitatesthe use of EHRs as a commonrepository of ADHD careinformation and communicationplatform for ADHD care teammembers.276

• Advocate for exceptions to HIPAAand FERPA regulations toallow more communicationbetween education and healthand mental health practitionerswhile maintaining privacyprotections.

• Ensure that billing, coding, andpayment systems provideadequate resources and time forclinicians to communicatewith teachers and mentalhealth clinicians, as discussedpreviously.

• Provide incentives for integrationof health and mental healthservices, collaborative care models,and telemedicine to facilitatecommunication among ADHD careteam members, includingtelemedicine services that crossstate lines.

• Fund research in telehealth to learnmore about who responds well tothese approaches and whethertelehealth is feasible forunderserved populations.

CONCLUSIONS

Appropriate and comprehensiveADHD care requires a well-trainedand adequately resourcedmultidisciplinary workforce, withoffice workflows that are organized to

provide collaborative services thatare consistent with a chronic caremodel and to promotecommunication among treatmentteam members.277–280 Many barriersin the current health care systemmust be addressed to supportthis care.

First and foremost, the shortage ofclinicians, such as child and adolescentpsychiatrists and developmental-behavioral pediatricians who provideconsultation and referral ADHD care,must also be addressed. Theshortages are driven by the lack ofresidency and other trainingprograms for pediatric clinicians inthe management of ADHD and otherbehavioral health issues, the lack ofreturn on investment in theadditional training and debt requiredto specialize in this area, andinadequate resourcing at all levels ofADHD care. The shortage isexacerbated by geographicmaldistribution of practitioners andlack of adequate mental healthtraining as a whole during residencyand in CME projects. These challengesmust be addressed on a system-wide level.

A significant review and change in theADHD care payment for cognitiveservices is required to ensure thatpractitioners are backed byappropriate resources that supportthe provision of high-quality ADHDcare. The lack of adequatecompensation for ADHD care isa major challenge to reachingchildren and adolescents with thecare they need. Improved payment isa major need to encourage primarycare clinicians to train in ADHDsubspecialty care and incentivizechild and adolescent psychiatry anddevelopmental-behavioral pediatricspractitioners to provide ADHD care inthe primary care setting, so theprovision of such care does not resultin financial hardship for the familiesor the practice. Improvement shouldalso include changes to payer policiesto improve compensation for care

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coordination services and mentalhealth care.

Because the pediatrician is often thefirst contact for a parent seeking helpfor a child with symptoms that maybe caused by ADHD, barriers topayment need to be addressed beforeproviding these time-consumingservices. Some insurance plans directall claims with a diagnosis reportedby International Classification ofDiseases, 10th Revision, ClinicalModification codes F01–F99 to theirmental and behavioral health benefitssystem. Because pediatricians aregenerally not included in networksfor mental and behavioral healthplans, this can create delays ordenials of payment. This is notalways the case, though, andwith a little preventive footwork,practices can identify policyguidelines for plans that arecommonly seen in the practice patientpopulation.

The first step in identifying coveragefor services to diagnose or treatADHD is to determine what paymentguidelines have been published byplans that contract with your practice.Many health plans post their paymentguidelines on their Web sites, buteven when publicly available, thedocuments do not always clearlyaddress whether payment forprimary care diagnosis andmanagement of ADHD are covered. Itmay be necessary to send a writteninquiry to provider relations and themedical director of a plan seekingclarification of what diagnoses andprocedure codes should pass throughthe health benefit plan’s adjudicationsystem without denial or crossover toa mental health benefit plan. It isimportant to recognize that even withdocumentation that the plan coversprimary care services related toADHD, claims adjudication is anautomated process that mayerroneously cause denials. Billingand payment reconciliation staffshould always refer such denials forappeal.

Once plans that do and do not providemedical benefits for the diagnosis andtreatment of ADHD have beenidentified, advocacy to the medicaldirectors of those plans that do notrecognize the role of the medicalhome in mental health care can beinitiated. The AAP template letter,Increasing Access to Mental HealthCare, is a resource for this purpose.Practices should also be prepared tooffer advance notice to parents whentheir plan is likely to deny or pay outof network for services. A list ofreferral sources for mental andbehavioral health is also helpfulfor parents whose financiallimitations may require alternativechoices and for patients who mayrequire referral for additionalevaluation.

For services rendered, identify thecodes that represent covereddiagnoses and services and be surethat these codes are appropriatelylinked and reported on claims.

When ADHD is suspected but not yetdiagnosed, symptoms such as attentionand concentration deficit (R41.840)should be reported. Screening forADHD in the absence of signs orsymptoms may be reported with codeZ13.4, encounter for screening forcertain developmental disorders inchildhood. Current ProceduralTerminology codes 96110 and 96112to 96113 should be reported fordevelopmental screening and testingservices.

Services related to diagnosis andmanagement of ADHD are more likelyto be paid under the patient’s medicalbenefits when codes reported are notthose for psychiatric or behavioralhealth services. Reporting of E/Mservice codes based on face-to-facetime of the visit when more than50% of that time was spent incounseling or coordination of carewill likely be more effective than useof codes such as 90791, psychiatricdiagnostic evaluation. CurrentProcedural Terminology E/M service

guidelines define counseling asa discussion with a patient or familyconcerning 1 or more of the followingareas:

• diagnostic results, impressions, orrecommended diagnostic studies;

• prognosis;

• risks and benefits of management(treatment) options;

• instructions for management(treatment) or follow-up;

• importance of compliance withchosen management (treatment)options;

• risk factor reduction; and

• patient and family education.

Finally, staff should track claimpayment trends for services related toADHD, including the number ofclaims requiring appeal and status ofappeal determinations to inform futureadvocacy efforts and practice policy.

Many AAP chapters have developedpediatric councils that meet withpayers on pediatric coding issues.Sharing your experiences withyour chapter pediatric council willassist in its advocacy efforts. AAPmembers can also report carrierissues on the AAP Hassle Factor Form.

These system-wide barriers arechallenging, if not impossible, forindividual practitioners to address ontheir own. Practice organization andcommunication changes can be made,however, that have the potential toimprove access to ADHD care.Clinicians and other practitioners canimplement the office work-flowrecommendations made in thePreparing the Practice section of theupdated PoCA (see SupplementalInformation). Implementing a patient-and family-centered medical homemodel, colocating health and mentalhealth services, and adoptingcollaborative care models can also helpovercome communication barriersand minimize fragmentation of care.It is noted that these models mustbe adequately resourced to beeffective.

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Finally, practitioners can implementinnovative communication andrecord-keeping solutions to overcomebarriers to ADHD care. Potentialsolutions could include the use ofEHRs, other electronic systems, andhigh-quality telemedicine to supportenhanced communication and record-keeping on the part of myriad ADHDcare team members. These solutionscan also aid with monitoringtreatment responses on the part ofthe child or adolescent with ADHD.Telemedicine also has the distinctbenefit of compensating for themaldistribution of specialists andother clinicians who can treatpediatric ADHD.

Many stakeholders have a role inaddressing the barriers that preventchildren and adolescents fromreceiving needed evidenced-basedtreatment of ADHD. Pediatriccouncils, the national AAP, and stateand local AAP chapters must beadvocates for broad changes intraining, CME, and payment policiesto overcome the systemic challengesthat hamper access to care. On anindividual level, practitioners caneffect change in their own practicesystems and professional approachesand implement systems that addressfragmentation of care andcommunication. Practitioners areimportant agents for change in ADHDcare. The day-to-day interactions thatpractitioners have with patients,families, educators, payers, stateinsurance regulators, and others canfoster comprehensive, contemporary,and effective care that becomesa pillar of advocacy and change.

SUBCOMMITTEE ON CHILDREN ANDADOLESCENTS WITH ATTENTION-DEFICIT/HYPERACTIVITY DISORDER

The Council on Quality Improvementand Patient Safety oversees theSubcommittee

Mark L. Wolraich, MD, FAAP(Chairperson: Section on

Developmental BehavioralPediatrics).

Joseph F. Hagan, Jr, MD, FAAP (ViceChairperson: Section on DevelopmentalBehavioral Pediatrics).

Carla Allan, PhD (Society of PediatricPsychology).

Eugenia Chan, MD, MPH, FAAP(Implementation Scientist).

Dale Davison, MSpEd, PCC (ParentAdvocate, Children and Adults withADHD).

Marian Earls, MD, MTS, FAAP (MentalHealth Leadership Work Group).

Steven W. Evans, PhD (ClinicalPsychologist).

Tanya Froehlich, MD, FAAP (Sectionon Developmental BehavioralPediatrics/Society for Developmentaland Behavioral Pediatrics).

Jennifer L. Frost, MD, FAAFP (AmericanAcademy of Family Physicians).

Herschel R. Lessin, MD, FAAP, Sectionon Administration and PracticeManagement).

Karen L. Pierce, MD, DFAACAP(American Academy of Child andAdolescent Psychiatry).

Christoph Ulrich Lehmann, MD, FAAP(Partnership for PolicyImplementation).

Jonathan D. Winner, MD, FAAP(Committee on Practice andAmbulatory Medicine).

William Zurhellen, MD, FAAP (Sectionon Administration and PracticeManagement).

STAFF

Kymika Okechukwu, MPA, SeniorManager, Evidence-Based MedicineInitiatives

Jeremiah Salmon, MPH, ProgramManager, Policy Dissemination andImplementation

CONSULTANT

Susan K. Flinn, MA, Medical Editor

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