Birth Defects and Developmental Disabilities Prevention State and Local Collaborative Efforts in Illinois

Dr. Jane Fornoff lllinois Department of Public Health Adverse Pregnancy Outcome Reporting System (APORS) Shelley Tulipana Sangamon County Department of Public Health

Demographics IllinoisIllinois 180,000 births/year180,000 births/year 12 million residents12 million residents 94 local health departments94 local health departments

Demographics IllinoisIllinois 180,000 births/year180,000 births/year 12 million residents12 million residents 94 local health departments94 local health departments Sangamon County 2,500 births/year 200,000 residents 877 square miles

Areas of Collaboration Adverse Pregnancy Outcome Reporting System (APORS)& local health departments High-risk infant follow-up programHigh-risk infant follow-up program EducationEducation Neural tube defect preventionNeural tube defect prevention

Adverse Pregnancy Outcome Reporting System Set up statewide in 1987 by Illinois Department of Public HealthSet up statewide in 1987 by Illinois Department of Public Health Infant Mortality Reduction InitiativeInfant Mortality Reduction Initiative Designed both as a surveillance system and a means of providing care to familiesDesigned both as a surveillance system and a means of providing care to families

Mechanism Hospitals complete a form when the infant is discharged from the hospitalHospitals complete a form when the infant is discharged from the hospital –Very-low birth weight –Birth defect –Prenatal drug exposure –Other adverse outcomes One copy to the local health departmentOne copy to the local health department One copy to the Illinois Department of Public HealthOne copy to the Illinois Department of Public Health

Funding Surveillance component funded by CDC and GRFSurveillance component funded by CDC and GRF Home visits funded through Illinois Department of Human ServicesHome visits funded through Illinois Department of Human Services

High Risk Infant Follow-up Parental consent is requiredParental consent is required Contact in 7 daysContact in 7 days Home visits at 2, 4, 6, 12, 18 and 24 monthsHome visits at 2, 4, 6, 12, 18 and 24 months Other requirementsOther requirements

Referrals Early InterventionEarly Intervention PhysiciansPhysicians Women, Infants and Children (WIC)Women, Infants and Children (WIC) Social Service AgenciesSocial Service Agencies

State-wide Outcomes Children born in 2002 or 2003 and reported to IDPHChildren born in 2002 or 2003 and reported to IDPH 60.9% high risk infants received at least 1 home visit60.9% high risk infants received at least 1 home visit 14.4% received other services from a local health department14.4% received other services from a local health department

Among those with a visit 60% received the first 2, 4, 6 and 12 month visits60% received the first 2, 4, 6 and 12 month visits 27% received the 18 and 24 month visits as well27% received the 18 and 24 month visits as well 62% received 6 or more visits62% received 6 or more visits

Education APORS maintains a supply of brochuresAPORS maintains a supply of brochures

Birth Defect Prevention Many neural tube defects (NTDs) are easily preventableMany neural tube defects (NTDs) are easily preventable Mothers with one NTD- affected pregnancy are at high risk for anotherMothers with one NTD- affected pregnancy are at high risk for another

Targeting Educational Efforts

Challenges ReorganizationReorganization Minor birth defectsMinor birth defects Hospitals knowing what to reportHospitals knowing what to report Late hospital reportingLate hospital reporting

Successes 10,000 children born in 2002 or 2003 received at least one home visit10,000 children born in 2002 or 2003 received at least one home visit Infant mortalityInfant mortality 1986: 12.0/1,000 live births 2004: 7.3/1,000 live births Integrated Local Health Department ServicesIntegrated Local Health Department Services Early prenatal care Well Child Clinics Immunizations Folic acid education