Birth Defects and Developmental Birth Defects and Developmental Disabilities PreventionDisabilities Prevention

State and Local Collaborative Efforts State and Local Collaborative Efforts in Illinoisin Illinois

Dr. Jane FornoffDr. Jane Fornofflllinois Department of Public Healthlllinois Department of Public Health

Adverse Pregnancy Outcome Adverse Pregnancy Outcome Reporting SystemReporting System

(APORS)(APORS)

Shelley Tulipana Shelley Tulipana Sangamon County Department of Sangamon County Department of

Public Health Public Health

DemographicsDemographics

• IllinoisIllinois

• 180,000 births/year180,000 births/year

• 12 million residents12 million residents

• 94 local health 94 local health departmentsdepartments

DemographicsDemographics

• IllinoisIllinois

• 180,000 births/year180,000 births/year

• 12 million residents12 million residents

• 94 local health 94 local health departmentsdepartments

• Sangamon CountySangamon County

• 2,500 births/year2,500 births/year

• 200,000 residents200,000 residents

• 877 square miles877 square miles

Areas of CollaborationAreas of Collaboration

Adverse Pregnancy Outcome Reporting System Adverse Pregnancy Outcome Reporting System (APORS)(APORS)

& & local health departmentslocal health departments

• High-risk infant follow-up programHigh-risk infant follow-up program

• EducationEducation

• Neural tube defect preventionNeural tube defect prevention

Adverse Pregnancy Adverse Pregnancy Outcome Reporting SystemOutcome Reporting System

• Set up statewide in 1987 by Illinois Set up statewide in 1987 by Illinois Department of Public HealthDepartment of Public Health

• Infant Mortality Reduction InitiativeInfant Mortality Reduction Initiative

• Designed both as a surveillance Designed both as a surveillance system and a means of providing system and a means of providing care to familiescare to families

MechanismMechanism

• Hospitals complete a form when the infant Hospitals complete a form when the infant is discharged from the hospitalis discharged from the hospital

– Very-low birth weightVery-low birth weight– Birth defectBirth defect– Prenatal drug exposurePrenatal drug exposure– Other adverse outcomesOther adverse outcomes

• One copy to the local health departmentOne copy to the local health department

• One copy to the Illinois Department of One copy to the Illinois Department of Public HealthPublic Health

FundingFunding

• Surveillance component funded by Surveillance component funded by CDC and GRFCDC and GRF

• Home visits funded through Illinois Home visits funded through Illinois Department of Human ServicesDepartment of Human Services

High Risk Infant Follow-High Risk Infant Follow-upup

• Parental consent is requiredParental consent is required

• Contact in 7 daysContact in 7 days

• Home visits at 2, 4, 6, 12, 18 and 24 Home visits at 2, 4, 6, 12, 18 and 24 monthsmonths

• Other requirementsOther requirements

ReferralsReferrals

• Early InterventionEarly Intervention

• PhysiciansPhysicians

• Women, Infants and Children (WIC)Women, Infants and Children (WIC)

• Social Service AgenciesSocial Service Agencies

State-wide OutcomesState-wide Outcomes

• Children born in 2002 or 2003 and Children born in 2002 or 2003 and reported to IDPHreported to IDPH

• 60.9% high risk infants received at 60.9% high risk infants received at least 1 home visitleast 1 home visit

• 14.4% received other services from 14.4% received other services from a local health departmenta local health department

Among those with a visitAmong those with a visit

• 60% received the first 2, 4, 6 and 12 60% received the first 2, 4, 6 and 12 month visitsmonth visits

• 27% received the 18 and 24 month 27% received the 18 and 24 month visits as wellvisits as well

• 62% received 6 or more visits62% received 6 or more visits

EducationEducation

• APORS maintains a supply of APORS maintains a supply of brochuresbrochures

Birth Defect PreventionBirth Defect Prevention

• Many neural tube Many neural tube defects (NTDs) are defects (NTDs) are easily preventableeasily preventable

• Mothers with one Mothers with one NTD-affected NTD-affected pregnancy are at pregnancy are at high risk for high risk for anotheranother

Targeting Educational Targeting Educational EffortsEfforts

ChallengesChallenges

• ReorganizationReorganization

• Minor birth defectsMinor birth defects

• Hospitals knowing what to reportHospitals knowing what to report

• Late hospital reportingLate hospital reporting

SuccessesSuccesses• 10,000 children born in 2002 or 2003 10,000 children born in 2002 or 2003

received at least one home visitreceived at least one home visit

• Infant mortality Infant mortality 1986: 1986: 12.0/1,000 live births12.0/1,000 live births2004: 2004: 7.3/1,000 live births7.3/1,000 live births

• Integrated Local Health Department Integrated Local Health Department Services Services

Early prenatal care Early prenatal care Well Child ClinicsWell Child ClinicsImmunizationsImmunizationsFolic acid educationFolic acid education