Improving Behavior Challenges andQuality of Life in the Autism LearningHealth NetworkJulia S. Anixt, MD,a,b,c Donna S. Murray, PhD,a,b,d Daniel L. Coury, MD,e Karen A. Kuhlthau, PhD,f Diane Eskra, MPA,c

Janet Seide, BS,b,g Amy Kelly, MBA, MNM,h Amy Hess, BS,e Paul H. Lipkin, MD,i,j J. Kiely Law, MD MPH,i,j Angie Fedele, BA,d

Carole Lannon, MD MPHa,c

abstract OBJECTIVES: To summarize baseline data and lessons learned from the Autism Learning HealthNetwork, designed to improve care and outcomes for children with autism spectrum disorder(ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life(QoL), receipt of recommended health services, and next steps.

METHODS: A cross-sectional study of children 3 to 12 years old with ASD receiving care at13 sites. Parent-reported characteristics of children with ASD were collected as outcomemeasures aligned with our network’s aims of reducing rates of challenging behaviors,improving QoL, and ensuring receipt of recommended health services. Parents completeda survey about behavioral challenges, co-occurring conditions, health services, and thePatient-Reported Outcomes Measurement Information System Global Health Measure andthe Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively.

RESULTS: Analysis included 530 children. Challenging behaviors were reported by the majorityof parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms,irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivityand irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-ReportedOutcomes Measurement Information System Global Health Measure total score of 23.6 (3.7)was lower than scores reported in a general pediatric population. Most children had receivedrecommended well-child (94%) and dental (85%) care in the past 12 months.

CONCLUSIONS: This baseline data (1) affirmed the focus on addressing challenging behaviors;(2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability,and anxiety; and (3) identified targets for reducing severity of behaviors and strategies toimprove data collection.

WHAT’S KNOWN ON THIS SUBJECT: Challenging behaviors arecommon in children with autism and have the potential tonegatively impact health, well-being, and quality of life. Cliniciansand parents are united in a goal to improve outcomes forchildren with autism.

WHAT THIS STUDY ADDS: Children enrolled in the AutismLearning Health Network demonstrate high rates of challengingbehavior (93%) and have significantly lower quality of lifecompared with the general population. These data informbaseline rates and specific improvement targets for the network.

To cite: Anixt JS, Murray DS, Coury DL, et al. ImprovingBehavior Challenges and Quality of Life in the Autism LearningHealth Network. Pediatrics. 2020;145(s1):e20191895E

aDepartment of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, Ohio; bDivision ofDevelopmental and Behavioral Pediatrics and cJames M. Anderson Center for Health Systems Excellence,Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio; dAutism Speaks, New York, New York; eDivision ofDevelopmental and Behavioral Pediatrics, Nationwide Children’s Hospital, Columbus, Ohio.; fDivision of GeneralAcademic Pediatrics, Massachusetts General Hospital for Children and Department of Pediatrics, HarvardMedical School, Harvard University, Boston, Massachusetts; gCurry School of Education and Human Development,University of Virginia, Charlottesville, Virginia; hDevereux Advanced Behavioral Health and Family PartnersProgram, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania; iKennedy Krieger Institute, Baltimore,Maryland; and jDepartment of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, Maryland

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The established multisite clinicalresearch network, Autism SpeaksAutism Treatment Network(ATN)–Autism Intervention andResearch Network on Physical Health(AIR-P), was established in 2008 andincludes academic medical centers1 inthe United States and Canada, whichconduct research and develop clinicalpractice standards for theidentification and treatment of co-occurring medical conditions inautism spectrum disorder (ASD).2–4

In December 2014, the ATN–AIR-Pbegan to transition to an AutismLearning Health Network (ALHN)with the goal to integrate qualityimprovement (QI) to improve careand outcomes for children with ASD.A learning health network, based onthe Institute of Medicine’s LearningHealthcare System,5,6 providesa platform for QI, research,innovation, and sharing of ideasand data to drive advances in careand translation of research intopractice.5,7

The ALHN design process focused onoutcomes identified as clear prioritiesby both parents and clinicians duringan in-person design session of keystakeholders, which is describedelsewhere6: optimizing the physicalhealth of children with ASD andtreating challenging and interferingbehaviors, which are common inchildren with ASD. Although it is wellknown that children with ASD canoften have significant behavioraldifficulties, we considered thefollowing in developing the key driverdiagram (KDD) framework for thenetwork: (1) the heterogeneity of thegroup of children with autism acrossthe spectrum with respect to coresymptom severity, cognitive ability,communication levels, and severity ofchallenging behaviors; (2) difficulty ofdefining a “good outcome” in ASDbecause this is likely subjective; and(3) a lack of standardized measuresfor assessing outcomes in childrenwith ASD. The KDD provides theframework for the network and

highlights 3 areas of focus8 (Fig 1):(1) ensuring that children with ASDreceive recommended routine healthservices to optimize physical health,(2) reducing rates of challengingbehaviors, and (3) improving qualityof life (QoL). Our theory was thatoptimizing both the physical andbehavioral health of children withASD would result in improved QoL.We decided to collect data directlyfrom families about behavioralconcerns and QoL because familymembers are best positioned toreport on the impact of ASD andassociated behaviors on the child’sday-to-day functioning as well asreceipt of routine health care services.We recognized that using patient- orparent-reported outcomes (PROs)as a primary outcome could bechallenging but was critical forcollecting the information we needed.

The purpose of this article is todescribe the results of data collectedon the first 530 children enrolled inthe ALHN, how these data would helpto set targets for network outcomes,

and the feasibility of using PROs. Ourhypotheses were that children withASD enrolled in ALHN would (1)commonly demonstrate challengingbehaviors ($65% of children on thebasis of studies of co-occurringpsychiatric conditions9–11) (2) havea lower parent-reported QoLcompared with a general pediatricpopulation, and (3) may notconsistently receive routinerecommended health services (eg,well-child care, dental visits) perpediatric guidelines12 because of theimpact of challenging and interferingbehaviors.

METHODS

The KDD

The first draft of the KDD wasdeveloped once the aims of improvingreceipt of routine health care, QoL,and the impact of challengingbehaviors were prioritized at the in-person design day meeting andpotential drivers for these aimswere hypothesized.6 Whereas the

FIGURE 1KDD for the ALHN. AAP, American Academy of Pediatrics; ECHO, Extension for Community HealthcareOutcomes; SMART, specific, measurable, achievable, realistic, and timely.

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aims for ALHN remain the sameover time, the KDD is an iterativedocument, in which the key driversand interventions can be modified asnew information about the systembecomes available and the aims maybe modified to become more specific.Descriptive behavioral, QoL, andhealth care data from childrenenrolled in ALHN were analyzed toset more precise targets forimprovement.

Study Population

Participants were recruited froma population of children with ASDreceiving care at 13 sites participatingin the ATN–AIR-P network betweenSeptember 2016 and November 2018(Supplemental Table 4). Participantsincluded children 6 to 12 years oldinitially (September 2016–September2017), with the age range forinclusion expanding to 3 to 12 yearsold in October 2017. To be eligiblefor participation, children neededto have an established diagnosis ofASD on the basis of Diagnostic andStatistical Manual of Mental Disorders,Fifth Edition, or Diagnostic andStatistical Manual of Mental Disorders,Fourth Edition, criteria and receiveongoing care at one of the ALHNclinical sites. Families were invitedto participate in ALHN by mail,e-mail, phone calls, or face-to-faceconversations at clinic visits. Writteninformed consent to join ALHN andallow data to be used for researchwas obtained from parents.This study was approved by theMassachusetts General Hospital(coordinating center) InstitutionalReview Board and by the institutionalreview boards or research ethicsboards at all 13 sites.

Measures

Data collection tools, processes,and measures were developed onthe basis of the aims and driversoutlined in the KDD. Familiesconsenting to participate in theALHN were asked to completesurveys either through a mobile app

on a smart phone or tablet, usingan online Web portal, or on paper.Parents were asked to complete 3surveys: a parent survey developedspecifically for the ALHN and 2previously published and validatedtools, the Aberrant Behavior Checklist(ABC)13 and the Patient-ReportedOutcomes Measurement InformationSystem Global Health Measure(PGH-7).14 The ALHN parent surveyincluded demographics; parentperceptions about challengingbehaviors and co-occurring medicalconditions (gastrointestinal [GI] andsleep problems), identifying whichbehaviors and/or symptoms wereproblematic and describing severity,frequency, and level of concern; andreceipt of routine, recommendedhealth care services (eg, well-childvisits, dental care). The ABC isa 58-item caregiver report formdeveloped to assess maladaptivebehaviors in individuals withdevelopmental disabilities and iscommonly used in studies of childrenwith ASD.15 The ABC contains thefollowing subscales: irritability,lethargy and/or social withdrawal,stereotypic behavior, hyperactivityand/or noncompliance, andinappropriate speech. Items are ratedon a 4-point Likert-type scale, withhigher scores on each subscaleindicating greater levels ofproblematic behavior. Parentswere asked to complete the PGH-7parent-proxy report, which isa brief, valid, and reliable (internalconsistency a = .84) tool for assessingoverall health, well-being, and QoLin pediatric populations.14 Itemsare scored on a 5-point Likert-typescale, with higher scores indicatingbetter health and well-being,and the total score can rangefrom 7 to 35.

Statistical Analysis

We conducted cross-sectionalanalyses of parent-reported surveydata. Descriptive statistics weretabulated for categorical variablesas frequencies and percentages and

for continuous variables as meanswith SD, medians, and ranges. TheABC and PGH-7 scales were scoredaccording to published instructions16

and were reported as describedabove for continuous variables,with the ABC reported by subscaleand the PGH-7 reported as a totalscore. Because standardizedpercentile or clinical cutoff scoresare not available for the ABC andthe PGH-7, to provide a generalcontext of how the ALHN population’sscores compare to other publishedstudy populations, mean (SD)scores were compared betweenour sample and published samplesby using a 2-sided Student’s t testwith a Bonferroni correction formultiple comparisons (significancecutoff of P , .005 with correction).Of note, because of age differencesbetween the ALHN and comparisongroups, these statistics provideonly a crude estimate of similaritiesand differences between thegroups.

RESULTS

Demographics

Data were collected on 619 childrenacross 13 ALHN sites out of a total of1319 who consented to participate inthe ALHN (47% overall surveycompletion rate; range: 25%–89% bysite). Detailed information about eachALHN site, labeled as sites A throughM, can be found in SupplementalTable 4. For this analysis,demographic data were available for617, behavior data from the parentsurvey for 530, ABC data for 510, andPGH-7 data for 526 subjects. Missingdata were due to incomplete parentsurvey responses. Participatingchildren had a mean age of 8.3 (2.6)years, and 80% were male. In termsof ethnicity and race, 86% were non-Hispanic, 87% white, and 9% AfricanAmerican (Table 1). There was widevariation in the number of childrenenrolled in the registry by center,with the number of participants per

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site ranging from 2 to 200, witha median of 31 children enrolled persite. The site with the fewestenrollees joined ALHN most recentlyin March 2018, and another lowerenrolling site left ALHN in 2017.

Co-occurring Behavioral and MedicalConditions

Challenging behaviors were the mostcommonly noted co-occurringconcern, with 93% of parents notingproblematic behaviors in the previousmonth and, of those, 85% indicatedthat their child’s biggest behaviorproblem was of moderate or worseseverity (moderate [47%], severe[28%], extremely severe [10%]) and61% reported high frequency(occurring every day or many timesper day). The types of behaviorchallenges most commonly reportedrelated to 3 areas: attention-deficit/hyperactivity disorder (ADHD),irritability and/or aggression, andanxiety (Fig 2). Similarly, whenparents were asked to indicate thesingle most challenging behavior,these 3 behavioral complexes weremost commonly endorsed (Fig 3).More than half (53%) of childrenwere taking medication to addressbehavior challenges.

The mean (SD) scores for the ABCsubscales reported for the ALHN

population are listed in Table 2,which also reveals ABC scoresreported in other published studypopulations.17,18

Both GI problems (44%) and sleepproblems (55%) were commonlyreported by parents. Of thosereporting GI problems, 31% reportedbeing moderately or extremelyconcerned, and constipation was themost commonly endorsed GI problem(65%). Of those reporting sleepproblems, 41% indicated a moderateor extreme level of concern.

QoL, Well-being, and RecommendedHealth Services

On the PGH-7, the mean (SD) totalscore of ALHN participants was 23.6(3.7) (Table 3). The majority ofchildren enrolled in ALHN hadreceived well-child care froma primary care clinician in the past12 months (94%) and had receiveda routine dental checkup (85%) perparent report.

Modifications to the KDD

A specific goal of decreasing theproportion of children withmoderate-to-extremely severebehavior challenges from 85% to70% by September 2020 was set onthe basis of current performance ofthe system and consensus opinion of

the ALHN leadership team ofa feasible improvement goal. A planwas developed to achieve this goalthrough a more targeted focus onimproved identification andtreatment of the most commonbehavior challenges and prioritiesreported by parents: ADHD,irritability, and anxiety. Similarly, theaim for improving “very good” or“excellent” QoL scores wasspecifically set to increase from 68%to 75%. The goal for receipt ofroutine health services was tomaintain current performance of thesystem at .90%.

DISCUSSION

Parents of children with ASDparticipating in the ALHN reportedhigh levels of concern aboutchallenging behaviors and co-occurring conditions of sleep and GIproblems, relatively poorer QoLcompared with a general USpopulation of children, and highlevels of receipt of well-child anddental care. ALHN, designed witha goal of improving care andoutcomes for children with ASD,has used these data to prioritizean initial focus on challengingbehaviors and to define specific,measurable targets for improvement.

Co-occurring Behavioral and MedicalConditions

The high rates of reported behavioralconcerns and co-occurring sleep andGI problems in children with ASDenrolled in the ALHN is notsurprising. Children with ASD are athigh risk for challenging behaviorssuch as aggression19 and commonlyhave co-occurring medical conditionssuch as GI20 and sleep problems.21–23

Co-occurring psychiatric conditionsare extremely common in childrenwith ASD (70%), especially ADHD,anxiety, and oppositional defiantdisorder, and 41% to 66% arereported to have 2 or morepsychiatric conditions.10,11

TABLE 1 Demographics

Characteristic n (%)

Age, mean: 8.3 y 6 2.6Age, y (n = 617)0–3 35 (5.7)4–6 150 (24.3)7–9 223 (36.1)10–12 209 (33.9)

Sex (n = 614)Male 491 (80.0)Female 123 (20.0)

Ethnicity (n = 618)Hispanic or Latino 66 (10.7)Non-Hispanic or non-Latino 532 (86.1)Unknown 20 (3.2)

Race (n = 595)Asian American 21 (3.5)African American 51 (8.6)White 519 (87.2)Other 41 (6.9)

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The ALHN sample’s ABC scoreswere compared to published meanscores for 2 similar-aged studypopulations, including a study ofchildren in general special educationprograms by Brown et al17 anda study of children with ASD byKaat et al18 (Table 2). ABC subscalescores for children in the ALHN weresimilar to the sample of children withASD,18 with the only significantdifference being a higher irritabilitymean score for the ALHN sample(13.5 vs 11.8; P = .003). ABC scoreson all subscales were significantlyhigher (P, .001) in the ALHN samplethan those reported for childrenfrom a general special educationpopulation, which included childrenwith a range of disabilities (deafness,blindness, epilepsy, cerebral palsy,medication use, and “other”conditions).17,24

Scores on the hyperactivity andirritability subscales of the ABC inparticular were elevated in the ALHN

population compared with a normedspecial education population.17 These2 ABC scales represent behavioralsymptoms similar to the prevalentpsychiatric diagnoses described10,11

and the types of behavior challengesmost commonly reported by parentsin the ALHN: ADHD symptoms,irritability, tantrums, repetitivethoughts and/or behaviors, notfollowing directions, and anxiety.

QoL, Well-being, and RecommendedHealth Services

PGH-7 QoL Data

The ALHN participants’ mean totalscore of 23.6 was significantlylower than the published normativepediatric population mean of 28.9reported by Forrest et al14 (P, .001),with a comparison between thesepopulations shown in Table 3. Scoreson each of the 7 scale items were alsosignificantly lower than publishedmeans (P , .001).14 Our findings ofsignificantly lower QoL in children

with ASD relative to the generalpediatric population were consistentwith our hypothesis and witha validation study of the PGH-7indicating children with ASD scored1.03 SD units lower than thosewithout ASD.25 Studies haveconsistently found that children withASD are reported to have lower QoLthan typically developing peers,26–28

with similar results reported fromstudies using the Pediatric Quality ofLife Inventory29 and a range of otherQoL assessment tools.26,27 Behaviorproblems in individuals with ASDhave been found to be significantlyrelated to QoL, with greater levels ofbehavioral difficulty associated withpoorer QoL in both children andadults.26,30

Recommended Health Services

The majority of children enrolled inthe ALHN had received routine well-child care and dental care in the past12 months. This contrasts with other

FIGURE 2Types of behavior challenges reported by parents who indicated their child had challenging or difficult behaviors in the past month. Note that parents cangive .1 answer and that categories are not mutually exclusive.

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data suggesting that children withASD are more likely than childrenwith other special health care needsto have unmet needs for health careservices.31 In national studies, it isreported that 15% of children withASD have unmet dental needs, and

although 91.5% of children with ASDhave a usual source of sick- and well-child care, only 18.9% have a medicalhome.32,33 Because children enrolledin ALHN are receiving treatment atspecialized autism centers, they mayhave better access to health care

services than the general populationof children with ASD.

Use of Data To Inform QI Priorities

Although high rates of challengingbehaviors and lower QoL areexpected findings in children with

FIGURE 3Child’s most challenging and/or difficult behavior by parent report.

TABLE 2 ABC Scores by Subscale, Comparing ALHN Sample Scores to Other Published Study Populations

ALHN Scores Scores Reported in Other Published Study Populations

Children With ASD Mean (SD),N = 511

ASD Sample Mean (SD),N = 604a

General Special Education Sample Mean (SD),N = 195b

ABC subscaleHyperactivity and/or noncompliance 17.9 (10.5)c 17.3 (10.9) 12.92 (11.70)c

Irritability 13.5 (9.2)d 11.8 (9.8)d 8.50 (8.11)c

Lethargy and/or social withdrawal 8.9 (7.6)c 9.4 (7.1) 5.47 (6.05)c

Stereotypic behavior 4.0 (4.1)c 4.6 (4.2) 2.71 (3.99)c

Inappropriate speech 3.5 (3.2)c 3.9 (2.9) 2.01 (2.60)c

Because full distribution of data for published populations was not available for review, and there are some differences in age groups between samples, it is possible that data mayviolate the assumptions of a t test and that the statistical significance of the comparisons may be overstated.a ASD sample: scores from Kaat et al18 reflect children ages 6 to 12 y old.b General special education sample: scores from Brown et al17 include combined sample mean scores (ages 6–10 y), as was used by Schmidt et al24.c Statistically significant differences (P , .005 with Bonferroni correction) between ALHN and Brown et al17 sample; on all ABC subscales, P , .0002.d Statistically significant difference (P , .005 with Bonferroni correction) between ALHN and Kaat et al18 sample; irritability scale only, P = .003.

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ASD, an understanding of the rates ofchallenging behaviors and populationmean scores on the ABC and PGH-7provides an important baseline tofocus improvement work asdescribed in the KDD (Fig 1). Ourdata have reinforced that our aimsare addressing an important aspect ofcare and have allowed us to setspecific targets for improvement asnoted in the aims of the KDD (eg,decreasing the percent of childrenwith moderate, severe, or extremelysevere behavior, as reported byparents, from 85% to 70%) andsupported our efforts to focus onthe identification and treatment of3 common drivers of behavioraldifficulty: ADHD symptoms (.60%),anxiety (47%), and irritable behavior(55%). The ATN–AIR-P has developedpractice pathways, tool kits, andresources for addressing these areas,but there is variation in their useacross centers. We will use QImethods to support clinical teams tostandardize the use of evidence-basedapproaches for the identificationand treatment of these co-occurringconditions, reduce practice variability,and, thereby, improve care andoutcomes for individuals with ASDand their families. The ALHN will usestatistical process control methods tomonitor changes over time inaggregate and by site, from which wewill be able to learn from variationand identify best practices. These

methods can then be applied toimproving other behavioralchallenges.

We anticipated many challengesinherent in designing a learninghealth network for ASD, includinglack of standardized outcomemeasures; heterogeneity in thepopulation with respect to ASDseverity, communication skills, andcognitive level; subjectivity andvariation in how families ratebehaviors; and inconsistency betweenpatients and sites in the frequency ofsubspecialty follow-up visits for ASD.Given the nature of the outcomes wewere targeting, we designed theALHN data collection system to relyheavily on PROs. This has been anexciting and novel aspect to ournetwork design and also an area ofchallenge. We learned that manyfamilies are eager to join the ALHNbut may not activate the mobileapp designed for survey completionand network participation, leadingto low completion rates (only 47%of consented families completedinitial surveys). Completion ratesvaried widely across sites, rangingfrom 25% to 89%. Sites with thehighest completion rates attributetheir success to providing familiesthe option to complete paper surveysduring the clinic visits, as analternative to the app, and throughresponse tracking and reminders.

On the basis of this feedback, 2significant changes are beingmade in the data collection:enhancing the app to allow familiesto track their own data, a featurethat families report would motivatetheir participation, and enrollingfamilies during clinic visits. TheALHN is also considering futureoptions for PRO integrationdirectly into the electronic healthrecord. We will continue toobtain feedback to learn fromfamilies about how to optimize thecollection and clinical integration ofPRO data.34

There are some limitations to ourdata. We did not collect informationabout completion rates, parentpreferences, or completeness of datausing different survey collectionmodalities (paper, app, Web portal).A better understanding of thisinformation would be helpful forimproving family participation. Thesechanges are being implemented ina new registry design. Variationacross sites in both participationrates and modality of questionnairecompletion may have led to responsebias. It is possible that familiesenrolled in the ALHN are notrepresentative of the broaderpopulation of children with ASD, inthat families attending specialtyclinics may have better access tohealth care and Internet access orfamiliarity with online surveys.Compared with a nationallyrepresentative ASD population, ourALHN sample had a similar sexdistribution but less racial diversity.35

However, a goal of the ALHN is toenroll 75% of all children with ASDwho receive care at ALHN sites,reflecting the broader populationseen at those sites. With morediversity in enrollment, we will bebetter able to identify and addressbarriers to care.

Despite the challenges in developingand launching a learning healthnetwork for autism, there are manybenefits to this approach, which

TABLE 3 Patient-Reported Outcomes Measurement Information System PGH-7 Parent-Proxy Scores:Total Score and Item-Level Scores Comparing ALHN Sample to Published Normative GeneralPediatric Sample

ALHN (N = 526),Mean (SD)

Normative General Population Sample (N = 1807a),Mean (SD)

PGH-7 domainTotal score 23.6 (3.7) 28.9 (4.2)Overall health 3.8 (0.9) 4.3 (0.8)QoL 3.9 (0.9) 4.3 (0.79)Physical health 3.8 (1.0) 4.3 (0.81)Mental health 2.9 (1.0) 4.1 (0.96)Feel sad 2.6 (0.8) 3.8 (0.91)Fun with friends 3.0 (1.0) 4.1 (0.84)Parents listen to ideas 3.6 (1.0) 4.1 (0.83)

The total score range is 7 to 35, and each subscale score range is 1 to 5.a Normative sample: scores from Forrest et al14 reflect ages 5 to 17 y. Mean PGH-7 total score and each individual PGH-7item score comparison was statistically significantly different between ALHN and Forrest et al14 sample; P , .001.

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allows for coproduction betweenfamilies and clinician-scientists tobetter identify and treat the problemsthat negatively impact the ability ofindividuals with ASD to reach theirfull potential.

CONCLUSIONS

After analyzing PRO data from .500children with ASD, the ALHN hasreaffirmed its focus on reducing theseverity of challenging behaviors andidentified the areas of ADHD, anxiety,and irritability as priority targets.Specific, measurable targets forimprovement were determined onthe basis of baseline data, andoutcomes will continue to becollected longitudinally. Theapplication of a learning healthsystem model is an innovativeand important advance in

developmental-behavioral pediatrics.This initial ALHN effort providedvaluable information about datacollection, concerns of parents,and engagement of families andclinicians. Lessons learned willimprove data collection methodsand integration of these data intoclinical care, support the ongoingpartnership with families, and willultimately improve care andoutcomes.

ACKNOWLEDGMENTS

We thank Logan Herbers andMatthew Fenchel for datamanagement and conductingstatistical analyses, Sarah McGovernand RaeAnne Davis for support withpreparation of this article, andMaurizio Macaluso for analyticconsultation.

ABBREVIATIONS

ABC: Aberrant Behavior ChecklistADHD: attention-deficit/

hyperactivity disorderAIR-P: Autism Intervention and

Research Network onPhysical Health

ALHN: Autism Learning HealthNetwork

ASD: autism spectrum disorderATN: Autism Treatment NetworkGI: gastrointestinalKDD: key driver diagramPGH-7: Patient-Reported

Outcomes MeasurementInformation System GlobalHealth Measure

PRO: patient- or parent-reportedoutcome

QI: quality improvementQoL: quality of life

Dr Anixt conceptualized and designed the study, designed data collections instruments, conducted some analyses, drafted the initial manuscript, and reviewed and

revised the manuscript; Drs Murray, Coury, and Kuhlthau, Ms Eskra, and Dr Lannon conceptualized and designed the study, designed data collection instruments,

interpreted results, and reviewed and revised the manuscript; Ms Seide, Ms Kelly, and Ms Hess as family coproducers conceptualized and designed the study,

contributed to the design of data collection instruments, and critically reviewed the manuscript for important intellectual content; Drs Lipkin and Law

conceptualized the study design and critically reviewed the manuscript for important intellectual content; Ms Fedele coordinated and supervised data collection

and critically reviewed the manuscript for important intellectual content; and all authors approved the final manuscript as submitted and agree to be accountable

for all aspects of the work.

DOI: https://doi.org/10.1542/peds.2019-1895E

Accepted for publication Jan 27, 2020

Address correspondence to Julia S. Anixt, MD, Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave,

MLC-4002, Cincinnati, OH 45229. E-mail: julia.anixt@cchmc.org

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: Supported by Autism Speaks and the Health Resources and Services Administration of the US Department of Health and Human Services under

cooperative agreement UA3 MC11054 (Autism Intervention Research Network on Physical Health). This information or content and conclusions are those of the

authors and should not be construed as the official position or policy of nor should any endorsements be inferred by the Health Resources and Services

Administration, US Department of Health and Human Services, or US government. This work was conducted through the Autism Speaks Autism Treatment Network

serving as the Autism Intervention Research Network on Physical Health.

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

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