Screening for Critical Screening for Critical Congenital Heart Disease in Congenital Heart Disease in

Newborns Using Pulse Newborns Using Pulse Oximetry – New Jersey’s Oximetry – New Jersey’s

ExperienceExperience

Lori Freed Garg, MD, MPHLori Freed Garg, MD, MPHNew Jersey Department of Health and Senior New Jersey Department of Health and Senior

ServicesServicesSACHDNC Meeting - January 27, 2012SACHDNC Meeting - January 27, 2012

Pulse Oximetry Screening Pulse Oximetry Screening LegislationLegislation

P.L. 2011, Chapter 74“The Commissioner of Health and Senior Services shall require each birthing facility licensed by the Department of Health and Senior Services to perform a pulse oximetry screening, a minimum of 24 hours after birth, on every newborn in its care.” -Signed June 2, 2011

-Effective Date -August 31, 2011 90 days after enactment-Unfunded Mandate

Role of NJDHSSRole of NJDHSS Mandated to screen, not how to screen Mandated to screen, not how to screen Point of care test Point of care test

Hospitals responsible for ensuring follow up, not Hospitals responsible for ensuring follow up, not NJDHSSNJDHSS

No active follow up as with biochemical NBSNo active follow up as with biochemical NBS Divisional ResponsibilitiesDivisional Responsibilities

Division of LicensingDivision of Licensing Oversight of hospital compliance with legislation Oversight of hospital compliance with legislation

Newborn Screening ProgramNewborn Screening Program Initial charge to develop Best Practices GuidelinesInitial charge to develop Best Practices Guidelines Expanded to support and guide implementation efforts to Expanded to support and guide implementation efforts to

build an effective screening & surveillance program build an effective screening & surveillance program

Pulse Oximetry Screening Pulse Oximetry Screening ImplementationImplementation

First steps:First steps: NJDHSS convened Critical Congenital Heart NJDHSS convened Critical Congenital Heart

Disease Screening Working GroupDisease Screening Working Group

Initial focus to develop and distribute Initial focus to develop and distribute recommended screening protocolrecommended screening protocol

Education/TrainingEducation/Training Distributed ProtocolsDistributed Protocols Conducted 2 webinarsConducted 2 webinars Frequent communication with hospitalsFrequent communication with hospitals Intensive efforts being planned Intensive efforts being planned

(pending resources)(pending resources) Best Practices GuidelinesBest Practices Guidelines Development of parent education handoutDevelopment of parent education handout Train the trainer model for nursing Train the trainer model for nursing

educationeducation Standardized slide deck for physicians Standardized slide deck for physicians

conferences at each hospitalconferences at each hospital

SurveillanceSurveillance Short Term Plan:Short Term Plan:

Quarterly aggregate dataQuarterly aggregate data # births# births # screened# screened

Birth Defects Registry –all failed screensBirth Defects Registry –all failed screens Screen results, results of evaluation, Screen results, results of evaluation,

prenatal history, history of symptomsprenatal history, history of symptoms Long Term PlanLong Term Plan

Electronic Birth Reporting SystemElectronic Birth Reporting System Birth Defects RegistryBirth Defects Registry

What We Know…What We Know…

Hospital Survey- Echo Availability August, 4, 2011

Does your facility have the ability to do an echocardiogram on siteDoes your facility have the ability to do an echocardiogram on site (by someone with expertise in conducting echocardiograms in newborns)?(by someone with expertise in conducting echocardiograms in newborns)?

Hospital Survey – Post Implementation

November 2, 2011 25/52 hospitals responded

All utilizing NJDHSS protocol Overall implementation was relatively smooth

Short implementation time Cost Documentation Most stated no significant issues

PRELIMINARY DATAPRELIMINARY DATA

August 31, 2011 – November 30, 2011August 31, 2011 – November 30, 2011

Number of live births Number of live births 24,80724,807Number of infants screened Number of infants screened 24,343 24,343 Percentage of infants screenedPercentage of infants screened 98.1%98.1%

Number of Failed ScreensNumber of Failed Screens 99 Number of Number of true cases true cases 22

ChallengesChallengesOverallOverall

90 day implementation period90 day implementation periodUnfunded mandate/limited staffing resourcesUnfunded mandate/limited staffing resourcesInclusion of all infants (NICU too)Inclusion of all infants (NICU too)

EducationEducationNeed for more intensive trainingNeed for more intensive training Need for educational materialsNeed for educational materials

Surveillance systemSurveillance systemAccuracy of data—steep learning curveAccuracy of data—steep learning curveAggregate dataAggregate dataQuality assuranceQuality assurance

StrengthsStrengths

>95% of infants screened in first 90 days>95% of infants screened in first 90 days Mechanism to collect data for program Mechanism to collect data for program

evaluationevaluation Covered a lot of ground with very limited Covered a lot of ground with very limited

resources--both financial and staffresources--both financial and staff Committed working group, dedicated Committed working group, dedicated

staff and established connections with staff and established connections with birthing facilitiesbirthing facilities

“It is because of your law that our son’s life was saved, and my husband and I are very grateful to you…”

Letter to Governor Christie from the family of Dylan Gordon

Lori.Garg@doh.state.nj.usLori.Garg@doh.state.nj.us