Network Implementation of Guidelinefor Early Detection Decreases Age atCerebral Palsy DiagnosisNathalie L. Maitre, MD, PhD,a,h Vera J. Burton, MD, PhD,c,d Andrea F. Duncan, MD, MSClinRes,e Sai Iyer, MD,f Betsy Ostrander, MD,g

Sarah Winter, MD,g Lauren Ayala, DPT,g Stephanie Burkhardt, MPH,a Gwendolyn Gerner, PsyD,c,d Ruth Getachew, BS,c

Kelsey Jiang, BS,f Laurie Lesher, RN, MBA,g Carrie M. Perez, MA, LPA,e Melissa Moore-Clingenpeel, MA, MAS,b Rebecca Lam, BA,i

Dennis J. Lewandowski, PhD,a Rachel Byrne, PTi

abstractBACKGROUND AND OBJECTIVES: Early diagnosis of cerebral palsy (CP) is critical inobtaining evidence-based interventions when plasticity is greatest. In 2017,international guidelines for early detection of CP were published on the basisof a systematic review of evidence. Our study aim was to reduce the age at CPdiagnosis throughout a network of 5 diverse US high-risk infant follow-upprograms through consistent implementation of these guidelines.

METHODS: The study leveraged plan-do-study-act and Lean methodologies. Theprimary outcome was age at CP diagnosis. Data were acquired during thecorresponding 9-month baseline and quarterly throughout study. Balancingmeasures were clinic no-show rates and parent perception of the diagnosisvisit. Clinic teams conducted strengths, weaknesses, opportunities, andthreats analyses, process flow evaluations, standardized assessments training,and parent questionnaires. Performance of a 3- to 4-month clinic visit wasa critical process step because it included a Hammersmith Infant NeurologicExamination, a General Movements Assessment, and standardizedassessments of motor function.

RESULTS: The age at CP diagnosis decreased from a weighted average of 19.5(95% confidence interval 16.2 to 22.8) to 9.5 months (95% confidenceinterval 4.5 to 14.6), with P = .008; 3- to 4-month visits per site increasedfrom the median (interquartile range) 14 (5.2–73.7) to 54 (34.5–152.0), withP , .001; and no-show rates were not different. Parent questionnairesrevealed positive provider perception with improvement opportunities forinformation content and understandability.

CONCLUSIONS: Large-scale implementation of international guidelines for earlydetection of CP is feasible in diverse high-risk infant follow-up clinics. Theinitiative was received positively by families and without adversely affectingclinic operational flow. Additional parent support and education arenecessary.

Worldwide, cerebral palsy (CP) is themost common childhood physicaldisability, with an incidence in theUnited States of 2 to 3 per 1000 livebirths.1 In the past decade, evidence forneuroplasticity in the first years of life

has grown, as has the body of evidencefor early targeted interventions torestore function. In the United Statesalone, there are 8 National Institutes ofHealth (NIH)–funded studies (as ofJune 2019) aimed at improving the

aCenter for Perinatal Research and bBiostatistics Core, TheAbigail Wexner Research Institute, and hDepartment ofPediatrics, Nationwide Children’s Hospital, Columbus, Ohio;cDivision of Neurology and Developmental Medicine,Kennedy Krieger Institute, Baltimore, Maryland;dDepartment of Pediatrics and Neurosciences IntensiveCare Nursery, School of Medicine, Johns Hopkins University,Baltimore, Maryland; eDepartment of Pediatrics, TheUniversity of Texas Health Science Center at Houston,Houston, Texas; fProgram of Developmental BehavioralPediatrics, Department of Pediatrics, Mattel Children’sHospital, and University of California, Los Angeles, LosAngeles, California; gDepartment of Pediatrics, School ofMedicine, University of Utah, Salt Lake City, Utah; andiCerebral Palsy Foundation, New York, New York

Dr Maitre conceptualized, designed, and executedthe study, conducted the initial analyses, drafted theinitial manuscript, and reviewed and revised themanuscript; Drs Winter, Ostrander, Iyer, Burton,Duncan, Gerner, and Ayala, and Ms Lesher designedindividual processes, coordinated and superviseddata collection, and critically reviewed themanuscript for important intellectual content; MsBurkhardt, Ms Jiang, Ms Getachew, Ms Perez, and MsLam designed individual processes, coordinated andcollected data, and critically reviewed themanuscript for important intellectual content; MsMoore-Clingenpeel designed, conducted, and draftedthe final analyses and reviewed and revised themanuscript; Dr Lewandowski designed the SQUIRE(Standards for Quality Improvement ReportingExcellence) 2.0 framework for the work, drafted theinitial manuscript, and reviewed and revised themanuscript; Ms Byrne funded, conceptualized, andexecuted the study and reviewed the manuscript;and all authors approved the final manuscript assubmitted and agree to be accountable for allaspects of the work.

DOI: https://doi.org/10.1542/peds.2019-2126

Accepted for publication Jan 13, 2020

To cite: Maitre NL, Burton VJ, Duncan AF, et al.Network Implementation of Guideline for EarlyDetection Decreases Age at Cerebral PalsyDiagnosis. Pediatrics. 2020;145(5):e20192126

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development of infants with CP.2

However, the design and testing ofearly interventions for CP ischallenging because the age at whichdiagnosis is ascertained throughoutthe United States is ∼2 years.3

Authors of a recent large study ofparent perceptions in the UnitedStates suggested the possibility andpreference for receiving an earlierdiagnosis.4 Previous studiesimplicated delayed diagnosis, withparents experiencing moredissatisfaction with the health caresystem, mistrust of providers, andsubsequently higher rates of anxietyand depression.5

In 2017, international guidelines forearly diagnosis of CP recommendedan algorithm for detection by usingassessments determined througha series of systematic reviews.6

Experts from all disciplines andparent stakeholders stated thatdiagnosis should occur as early aspossible and proposed 2 differentpathways to establish an accurate,early diagnosis before 12 months.Tools for detection includedneuroimaging and Prechtl’s GeneralMovements Assessment (GMA)7

before 5 months and use of theHammersmith Infant NeurologicExamination (HINE)8 in a longitudinalfashion between 3 and 12 months.These tools, combined with variousmotor function assessments,including the Test of Infant MotorPerformance (TIMP),9 assist inestablishing a comprehensive picturethat includes neurologicexaminations, clinical history, motorfunction evaluation, imaging ofperinatal brain insults, andbiomarkers, thus making earlydiagnosis both feasible and accurate.6

There is, however, a gap in practicebetween the expert endorsement ofevidence in the guidelines for earlydetection of CP and the currentclinical approach in many US high-risk infant follow-up (HRIF)programs. Implementation sciencecan help address this gap, not only at

a local and/or programmatic level10

but also in a scaled-up approachthroughout a network. Therefore, ourgoal was to successfully implementthe guidelines for early detection ofCP throughout 5 US institutionsserving a diverse mix of rural andurban populations (combinedcatchment area equivalent to 14% ofthe contiguous United States).Approximately 50% of infantsdiagnosed with CP at any time haveidentifiable perinatal events thatresult in NICU care; these infants areroutinely managed in an HRIFprogram.11–14

Using standard implementationscience methodology combining plan-do-study-act (PDSA) cycles andleveraging Lean Six Sigma principles,we aimed to decrease the age at CPdiagnosis throughout our network ofHRIF programs to 12-monthscorrected age (CA) over the course of1 year. Secondary aims includeddemonstration of processimprovement through increase in 3-to 4-month CA visits withrecommended standardizedassessments and examination ofbalancing measures of clinic flowindexed as patient no-show rates.

METHODS

Context

HRIF clinics were recruited throughleadership attendance at theAmerican Academy of Cerebral Palsyand Developmental Medicine annualmeeting and with assistance from theCerebral Palsy Foundation. Sitecharacteristics are listed in Table 1. Arequirement for site inclusion duringthe 3-month planning phase wasdemonstration of leadership visionsupport and institutionalcommitment to change throughpersonnel and time allocation. Allsites’ HRIF referral criteriarepresented standard clinical practiceincluding prematurity, very low birthweight, birth depression,extracorporeal membrane

oxygenation, neonatalencephalopathy, and primaryprovider concerns for birth insult.

Intervention

During the planning phase,organizational infrastructure wasdeveloped, with a lead site that hadpreviously implemented theguidelines. Local coordinators anda central project manager wereidentified, and a commitment to theproject from teams and leadership atall institutions was demonstrated. Atargeted framework for a strengths,weaknesses, opportunities, andthreats (SWOT) analysis(Supplemental Fig 4) allowed criticalexamination of basic resource needs.A general suppliers, inputs, process,outputs, and customers (SIPOC) chart(Fig 1) with key interventionelements (Supplemental Table 5) wasdeveloped at the lead site, whereclose examination of process flowwaste and value added to patientsand teams was conducted. Aneducation bundle and strategicinfrastructure plan were agreed onbetween the foundation and the leadsite, where a central institutionalreview board (IRB) was approved. AResearch Electronic Data Capture(REDCap) database was designed toallow Web-based input of a basic dataset and questionnaires, includinga repository for deidentified GMAvideos for clinical readingpurposes only.

Each team included a site principalinvestigator and/or coinvestigator(neonatologist, neurologist, ordevelopmental pediatrician), processcoordinator, and partner specializingin psychometric assessments(physical therapist orneuropsychologist). Funding wasprovided for education and datacollection efforts but not forproviders to perform assessments;GMA, HINE, and motor tests were tobe implemented as standard clinicalcare. Foundation partnerscoordinated site communication

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efforts through telehealth, createdtool repositories, and kept records ofprocess troubleshooting solutions.

The preparation phase included site-specific IRB approvals, baseline dataacquisition, and training of clinicalpersonnel involved in early detectionwith the HINE and GMA. During sitevisits, preplanned SWOT analyses hadidentified the most commonchallenges as lack of formal trainingin neuromotor tools, variability ofvisit schedules and components, andvariability of process flow efficiency(waste and value) in clinic settings. Atsite visits, Lean Six Sigmamethodology allowed current processflow analysis and redesign toincorporate standardized schedulesand assessments plus communicationand care pathways.

Planning and preparation phaseswere collectively allocated 3 months;the implementation phase wasinitiated over the course of 1 weekwith subsequent data collection ona continuous basis for 9 months. Keysteps of implementation(Supplemental Table 5) includedcritical adjustment to all HRIF clinicschedules to include a 3- to 4-month

visit with an HINE, GMA, and motorassessment; this scheduling changereplaced the existing 2- to 6-monthvisits. Return visits for infants withhigh risk for CP classification werescheduled 3 months later for a repeatHINE and review of neuroimaging ifapplicable. The implementation phaseincluded data collection, monthly site-specific calls with the lead site andfoundation, and monthly all-site callsto address process issues, obstacles,and education needs and to jointlytroubleshoot common issues. Tofacilitate implementation of the GMA,sites uploaded deidentified videos toREDCap for advanced readers toreview and discuss. Additionalvideoconferences addressed difficultGMA cases, HINE consistency, andTIMP.9

Study of the Intervention

To assess the impact of theintervention, we comparedpostintervention data over 3consecutive trimesters to a 9-monthbaseline (same calendar months inthe previous year, with intervening 3-month washout; Supplemental Fig 5).This allowed us to establish whetheroutcomes resulted from the

intervention and measure howrapidly changes occurred.

Measures

The primary outcome measure wasCA at CP diagnosis. The primaryprocess measure was the number ofvisits at 3 to 4 months’ CA becausethis was the critical entry point inpathways to receiving the diagnosis inthe SIPOC chart and publishedimplementation efforts.10 We alsoexamined the number of new CPdiagnoses and number of infantsclassified as high risk for CP tofurther assess the impact oninterventions. Additional secondarymeasures were the number of GMAsperformed in the NICU as an ancillarypathway entry point, number of theseinfants with abnormal GMA, includingthose who would not typically qualifyfor HRIF clinics, as well as thenumber of infants in the pathwaywith abnormal GMA at 3 months andage at high risk for CP diagnosis.Quarterly reviews monitored datacompleteness and accuracy;aggregate data were shared quarterlyduring all-site calls. Balancingmeasures were parental perception ofdiagnosis visits and monthly no-show

TABLE 1 Site Characteristics of Participating Hospitals

UCLA NCH Utah KKI UT-Houston

Setting Urban predominant Urban-rural mix Rural predominant Urban predominant Urban-rural mixNICU catchmentarea, squaremiles

∼5000 ∼60 000 .300 000 ∼12 000 ∼30 000

Beds in referringNICU(s)

45 260 108 80 120

Level of theNICU(s)

4 and 3 4 and 3 4 and 3 4 and 3 4

Annual NICUadmissions

623 3251 1250 1080 1500

Annualadmissions,1000 g

48 187 95 85 100

Annual HIEadmissions

17 58 27 20 20

Annual HRIF visits 385 5400 567 1072 0HRIF clinic team Neonatologist, DBPeds, NP,

PT, OT, fellow, RD,coordinator

Neonatologist, neurologist, NPs,RN, RD, LSW, OT, PT,coordinator, SLP, psychologist

DBPeds, neurologist,NPs, PT, OT, RNMBA

Neurologist, neonatologist,PT, OT, RN, coordinator,psychologist, NPs

Neonatologists,PMR, PT, LPA, RN

DBPed, developmental and behavioral pediatrician; HIE, hypoxic ischemic encephalopathy; NCH, Nationwide Children’s Hospital; KKI, Kennedy Krieger Institute; LPA, licensed psychologicalassociate; LSW, licensed social worker; MBA, master of business administration; OT, occupational therapist; PMR, physical medicine and rehabilitation; PT, physical therapist; RD, registereddietician; RN, registered nurse; SLP, speech language pathologist; UCLA, University of California, Los Angeles; UT-Houston, The University of Texas Health Science Center at Houston.

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rates. Parental perceptions wereobtained by a questionnaire derivedfrom Baird et al5 conducted 3 to4 months after diagnosis in person,

through e-mail or text links, or byphone; no-show rates were extractedfrom each site’s electronic medicalrecord (EMR).

Analysis

Weighted, linear mixed-effectsregression evaluated whether the age

FIGURE 1Initial SIPOC chart with process flow developed at lead site. Entry into process happens in the NICU or the clinic. In the NICU, a coordinator (social worker,nurse, therapists, etc) screens the census weekly for infants meeting GMA age criteria. If there is no EMR GMA, the coordinator notifies the inpatient GMAteam (therapists or physicians) of needed GMAs. The team can request additional review by an advanced GMA reader or entire team if uncertain. If theread is cramped synchronized (CS), the primary clinical team for the infant is notified and counseling is provided to the parents and/or team withrequest for an MRI. An HRIF visit at 3 to 4 months’ CA is scheduled if the patient does not already qualify per clinic criteria. If the infant is already at 3 to4 months and the GMA is abnormal, the HRIF team can perform the HINE and make recommendations in the NICU. At 3 to 4 months, infants receive theTIMP, GMA, and HINE in addition to standard HRIF visit components. TIMP is performed by therapists, HINE by medical providers, and both can perform theGMA. If assessments indicate a high-risk for CP on the basis of published evidence and neuroimaging cannot confirm a perinatal brain insult,a classification of high risk for CP is given with counseling. MRI is ordered, and a return visit is scheduled to discuss MRI results and repeat the HINE. Ifassessments, history, imaging, and examination all indicate CP and no progressive disorder is suspected, a diagnosis of CP is given. Counseling andeducational materials are provided, a follow-up phone call to discuss further questions is offered, any therapy or clinical trial referrals are made asapplicable, and the next visit is scheduled 3 months later for goal setting and adjustments to the plan. abn, abnormality; AS, asymmetry score; CHD,chronic heart disease; CNS, central nervous system; EI, early intervention; GM, general movements; HIE, hypoxic ischemic encephalopathy; IUGR,intrauterine growth restriction; NCH, Nationwide Children’s Hospital; NTD, nothing to do; PMA, postmenstrual age.

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at CP diagnosis changed significantlyover time by comparing weighted-average ages during each interventionperiod to the baseline. The averageage for each site-era was used as theoutcome measure; weights wereapplied on the basis of the proportionof total observations that wererepresented in the site-era average,such that resulting weighted-averageages accounted for varying numbersof patients contributed per site.Poisson mixed-effects models wereused to determine at whichintervention periods the cumulativeaverage numbers of 3- to 4-monthvisits and new CP diagnoses differedfrom the baseline period; weightedaverages (least-squares means) and95% confidence intervals (CIs) werereported for each study era. Analyseswere conducted by using SAS 9.4(SAS Institute, Inc, Cary, NC).

Ethical Considerations

Ethical aspects of implementing theintervention included reviewingparent questionnaires for signs ofconcern within 24 hours of questionentry. Coordinators were instructedto access local social work resourcesshould concerns arise for mentaland/or behavioral health duringprocess implementation. IRBapproval for the initiative wasobtained at Kennedy Krieger Instituteand the University of Utah; theinitiative was deemed exempt afterIRB review as quality improvement atNationwide Children’s Hospital, TheUniversity of Texas Health ScienceCenter at Houston, and University ofCalifornia, Los Angeles.

RESULTS

Weighted-average age at CP diagnosisdeclined by 3.5 months (95% CI 25.3to 21.7) per intervention era (P ,.001), from 19.5 months during thebaseline period to 9.5 months bytrimester 3 (Fig 2A, Table 2). Bytrimester 2, the age at diagnosis wasalready younger than the age duringthe baseline period. During the 9-

month baseline era, there were onaverage 24 visits per site pertrimester at 3 to 4 months’ CA(Table 3). The number of 3- to 4-month visits per site and pertrimester was not different from the

baseline at trimester 1 but wassignificantly greater than the baselinefor trimesters 2 and 3 (Fig 2B,Table 3). There was a significantincreasing trend for 3- to 4-monthvisits over time from trimester 1 totrimester 3 (P , .001). The totalnumber of visits at 3 to 4 months’ CAwas 515 in the 9-month baselineperiod and 893 in the 9-monthintervention period (SupplementalFig 5). There were significantly fewerCP diagnoses per site per trimester intrimester 1 compared to the baseline,whereas there was no significantdifference among the baseline andtrimesters 2 and 3 (Table 3, Fig 2C).There was, however, a significantincreasing trend over time for newdiagnoses from trimester 1 totrimester 3 (P = .002). Total newdiagnoses (133 cumulative attrimester 3 vs 111 at baseline) maynot accurately reflect the number ofdiagnoses given that 144 infants hada new “high risk for CP” classificationduring the intervention phase(Supplemental Fig 6) and mightconvert to CP diagnosis after the 9-month intervention period.

Additional process metrics includednew assessments performed (NICUGMAs, cramped synchronized GMAs,infants who would not have metcriteria for HRIF without NICU GMA,absent fidgety GMA, and the numberand timing of classifications of highrisk for CP). New assessmentsdemonstrated adherence to theprocess and are being used in thenext PDSA cycles, although nocomparisons could be made to the erabefore implementation (Table 4).

FIGURE 2Primary outcome measure and process met-rics. A, Weighted-average age at CP diagnosis(primary outcome). Model-adjusted estimatesaccount for variability across sites; P valuesare based on Dunnett’s correction for multi-plicity. B, Visits at 3 to 4 months’ CA per siteand per trimester (primary process measure).C, New CP diagnoses per site per trimester.Median number of visits and diagnoses per siteper 3-month period; P values are based onmodel-adjusted values for within-site andwithin-study era variability.

TABLE 2 Primary Outcome Measure

Era Weighted Average Age at Diagnosis, moa

(95% CI)Pb

Baseline 19.5 (16.2 to 22.8) ReferenceTrimester 1 14.5 (5.9 to 23.0) .57Trimester 2 10.8 (5.1 to 16.6) .04Trimester 3 9.5 (4.5 to 14.6) .008

a Model-adjusted estimates account for variability across sites.b Based on Dunnett’s correction for multiplicity.

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With regard to balancing measures,no-show rates across the networkremained constant during theintervention period (15% vs 16%; P =.90). Balancing measures alsoincluded parent metrics of thosereceiving a CP diagnosis. Although76% were married, only one parentwas present to receive the diagnosisapproximately half of the time.Providers (98% physician, 2% nursepractitioner [NP]) sat 65% of the timewhile giving the diagnosis and stood31% of the time. A large majority ofparents felt providers showedempathy and support, but 10% didnot. Information about the diagnosiswas sufficient in content 55% of thetime and in words understandable toparents 72% of the time. Allproviders asked parents if they hadquestions before the end of thesession (Fig 3).

DISCUSSION

This is the first successfulimplementation of internationalguidelines for early diagnosis of CPacross a clinical network of USinstitutions. We implementeda process that lowered the age ofdiagnosis below 12 months’ CA andachieved this goal in 12 monthsthrough careful adherence to CPdiagnosis criteria.15 Applying allelements of the guidelines allowedclinicians to have available muchearlier clinical history, neurologicexamination, motor functionassessments, neuroimaging, andbiomarkers after they ruled outprogressive disorders or otherdiagnoses. The implementation phasefinished in 2018, 15 months afterpublication of the guidelines.

The starting average-weighted age atCP diagnosis across all institutionswas 19.5 months, consistent withinternational registries andpublications.13,16,17 The American

Academy of Pediatrics recommendsscreening for neuromotor problemsin general pediatric settings as earlyas 9 months,18 although currentlythere are no formal statementsregarding early CP diagnosis.Similarly, although guidelines forearly diagnosis exist and expertsagree on their value, many providersstill hesitate to use tools at or below 3to 4 months to diagnose CP.10,19,20

The discomfort with early diagnosis(at least in US settings) may relate tolack of knowledge.21 GMA training istime and resource intensive, andreliability of the assessment increasesonly with repeated practice and self-assessment.22,23 Therefore, GMAtraining was part of a comprehensivepackage that included regular reviewof videos with the network sites,advanced training for superusers, anda secure deidentified repository thatallowed newer practitioners to obtainadvice from more experienced ones,while respecting the Health InsurancePortability and Accountability Act.

Another educational gap prevalent inHRIF clinics with multidisciplinaryproviders was lack of a commonstandardized neurologic examination,which may contribute to uncertaintyin diagnosis and difficulties incommunication, especially with morespecialized providers. Although theHINE is not the only standardizedneurologic examination in infancyand is by no means comprehensive, itis the only one with published

TABLE 3 Process Metrics: 3- to 4-Month Visits and New CP Diagnoses

Actual Values Model Adjusted P

Median IQR Meana 95% CI

No. 3–4 mo visits per site per trimesterBaseline (per trimester) 14 (5.2–73.7) 24.0 (9.8 to 59.0) ReferenceTrimester 1 9 (5.5–60.5) 19.7 (8.0 to 48.6) .23Trimester 2 47 (24.0–115.0) 45.5 (18.6 to 110.8) ,.001Trimester 3 54 (34.5–152.0) 59.8 (24.6 to 145.4) ,.001

No. new diagnoses per site per trimesterBaseline (per trimester) 10.3 (1.7–17.7) 6.6 (2.3 to 19.0) ReferenceTrimester 1 3 (1.0–8.5) 3.0 (1.0 to 9.0) .02Trimester 2 7 (4.0–16.5) 6.4 (2.2 to 18.6) ..99Trimester 3 8 (2.5–25.0) 7.4 (2.6 to 21.1) .89

IQR, interquartile range.a Model-adjusted values are not actual values. They are numbers modified for within-site and within-study era variability and allow statistical comparisons.

TABLE 4 Secondary Process Metrics

9-mo Data Beforea

Implementation9 mo After

Implementation

GMAs performed in the NICU,b n 95 965Infants with cramped synchronized GMA in the NICU, n 5 63Infants with cramped synchronized GMA not typically referred toHRIF, n

3 23

Infants with absent fidgety GMA at 3–4 mo CA, n c 66High risk for CP classifications, n c 144Weighted CA at high risk for CP, mo c 5.1

a Only 1 site had processes in place before implementation; data from 4 other sites were 0.b Only GMAs performed clinically are included.c No previous data were collected on this metric.

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optimality and cutoff scores.24 Broadand manualized training in theHINE25 and insistence on reliabilityand regular self-assessment enhancedthe comfort level of practitioners inour network and contributed to thesuccess of our initiative. The HINEallows early detection of typology ofCP and additionally providesa longitudinal evaluation ofimpairment severity in infants(before the Gross Motor FunctionClassification System can be reliablyascertained).26

Reliance on rigorous examination andreevaluation of organizationalprocesses in HRIF settingscontributed to the success of theproject and trust from institutionalsupports. Process metrics revealedincreased frequency of 3- to 4-monthvisits, allowing for more consistentuse of the GMA at fidgety age, whensensitivity and specificity for CP arehighest.27,28 Although a reliablepathway to this initial visit from theNICU or the community often provedchallenging, all sites were able toimplement it without adverse effectson other clinic processes. Inparticular, template use remained

consistent with stable no-show rates.The restructuring of process flows toinclude a 3- to 4-month visit replacedearly visits or shifted an existingschedule but did not cause unduedisruptions to the patients’ clinicaljourneys or overburden the system.

Opportunities for improvement wereevident in the initial process steps inmost settings, where use of the GMAin the NICU uncovered differences inthe ability of various sites to obtainneuroimaging. MRI was not alwaysperformed in the NICU or in the clinicbecause of cost considerations,general anesthesia risk, or otherprovider considerations.29 Additionalopportunities for processoptimization included betterintegration into the EMR andstreamlining of communication whenabnormal findings were detected andbecame goals of the ongoingdevelopment phase. The mostpressing opportunity forimprovement was better support ofparents around the diagnosis visit.Easy changes included emphasizingcurrent research on the topic andensuring physicians sat duringcounseling (eg, providing additional

seating). Patients perceive physiciansas better listeners and moreempathetic when they sit forimportant conversations, rather thanstand.30 To improve physicians’projection of caring, we includedfeedback from the parents of patients,self-assessments, and support frommore experienced practitioners. Sucha “buddy system” was alreadyimplemented at the lead site10 andbecame a priority throughout thenetwork.

Importantly, balancing measures (eg,stable clinic no-show rates, parentquestionnaire responses thatsupported overall positive impressionof the initiative) were consistent withprevious single-site implementationefforts.10 Because processes at allsites carefully considered waste andvalue added during preparation andimplementation, this result was notunexpected. Generally, parents ofinfants who received a CP diagnosisduring this implementation initiativewere satisfied with the providers andthe information received. Overall,satisfaction rates were no differentfrom those reported for other types ofdisorders including autism ordevelopmental disabilities.31–33

However, parent responses revealednumerous opportunities forimprovements, as did review ofsecondary metrics.

With regard to information giving, thenetwork sites decided to pool theirexisting resources and learn fromparent feedback about whichresources were most useful andaccessible. For example, whereassome parents liked The Cerebral PalsyTool Kit,34 sites in the areas that weremore rural (Table 1) preferred Web-based resources that includedcapsules of videotaped information.35

This may be due in part to varyingliteracy rates across the United States.In our network, estimates of theproportion of the population $16lacking basic prose literacy skills are23% (CA), 19% (TX), 11% (MD), and9% (UT and OH).36 In addition, in

FIGURE 3Parent metrics: perception of provider. Percentages of parents’ responses to questions regardingthe diagnosis visit are shown. Questionnaires were conducted 3 to 4 months after the diagnosis visiteither in person, through e-mail or text links, or over the telephone.

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central Appalachian counties of Ohio,low literacy rates are 20.6%.37

Limitations of this study included itsprimary focus on HRIF programs.These programs were chosen forfeasibility purposes; however, someof the processes described andmeasures implemented may not berelevant or feasible in primary carepractice. We focused on largeacademic centers with regionalreferral NICUs to have the broadestcatchment areas. Therefore,modifications of the approach wouldbe necessary for settings in whichlower-risk populations of infants orlow-resource settings are considered.Elements that could remedy distanceor training issues include remotereads of videotaped GMA (as in thecurrent project) and ongoing peer-to-peer support for medical providersthrough telehealth. Finally, althoughthe weighted average of new CPdiagnoses across sites did not reachstatistical significance, the totalnumber increased and will continueto increase as those with high-riskclassifications convert to CP, with thenext improvement cycles addressingthis conversion.

CONCLUSIONS

Implementation of guidelines forearly detection of CP by using qualityimprovement and implementationscience tools is both feasible andeffective. Children diagnosed beforethe age of one year were immediatelyreferred to available services or NIH-funded research programs. Parentswere able to offer their opinions oncommunication improvements andvoice their needs for futureimprovements. The resulting nextsteps include the development ofwraparound models of parent-targeted education, evidence-basedresearch integration, and parentsupport through behavioral healthresources. Each site continuesthrough PDSA cycles to improve thestructure and content ofimplementation with continueddialog across institutions.Transparency between sites allowsfor the rapid selection and adoptionof optimal interventions. Finally, thesuccess of the implementationprocess encouraged statecollaboratives and other large stateinstitutions to join the network orlearn from its challenges.

ACKNOWLEDGMENTS

We thank all our patients and theirfamilies as well as Ms Joanna Kinnerfor her administrative assistancethroughout this project.

ABBREVIATIONS

CA: corrected ageCI: confidence intervalCP: cerebral palsyEMR: electronic medical recordGMA: General Movements

AssessmentHINE: Hammersmith Infant Neu-

rologic ExaminationHRIF: high-risk infant follow-upIRB: institutional review boardNIH: National Institutes of HealthNP: nurse practitionerPDSA: plan-do-study-actREDCap: Research Electronic Data

CaptureSWOT: strengths, weaknesses, op-

portunities, and threatsSIPOC: suppliers, inputs, process,

outputs, and customersTIMP: Test of Infant Motor

Performance

Address correspondence to Nathalie L. Maitre, MD, PhD, Department of Pediatrics, Nationwide Children’s Hospital, 700 Children’s Way, Columbus, OH 43205. E-mail:

nathalie.maitre@nationwidechildrens.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 the National Institutes of Child Health and Human Development (grant R01HD081120-01A1) to Dr Maitre and an award from the Cerebral

Palsy Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Funded by the National Institutes of Health (NIH).

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

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