INTERACTIONS BETWEEN BIRTH DEFECTS PROGRAMS AND LOCAL HEALTH DEPARTMENTS: Preliminary Results from a Survey Conducted by the National Birth Defects Prevention Network (NBDPN) and NACCHO Samara Viner-Brown, MS Emerging Issues in MCH Webcast

NBDPN SURVEY DEVELOPMENT GROUP Tim Flood (AZ) Russ Kirby (AL) Cara Mai (CDC) Russel Rickard (CO) Sam Viner-Brown (RI)

DIRECT INTERACTIONS BETWEEN STATE BIRTH DEFECTS PROGRAMS AND LHDs NoYes Unknown n = 43 (n = 19)(n = 23) (n = 1) “Does your State Birth Defects Program directly interact with local health departments/regional offices?”

1.Data Dissemination and Utilization 2.Cluster Investigation 3.Referral and Direct Services 4.Resources 5.Prevention 6.Data Requests/Data Sharing DIRECT INTERACTIONS BETWEEN STATE BIRTH DEFECTS PROGRAMS AND LHDs

1.DATA DISSEMINATION AND UTILIZATION Frequency BD Program ActivityOngoing1 or 2/yr RarelyOn Request Never Generates counts and rates of birth defects 32% (7) 32% (7) 9% (2) 18% (4) 9% (2) Provides reports (or notices of reports) about rates of NTDs or other birth defects at a local level 14% (3) 40% (9) 5% (1) 27% (6) 14% (3) Uses data to identify areas in need of services at a local level 18% (4) 5% (1) 14% (3) 50% (11) 14% (3) Provides other data and utilization services at a local level 27% (6) 5% (1) 14% (3) 45% (10) 9% (2) n = 22

2.CLUSTER INVESTIGATION 65.2% (15/23) reported they offer services related to cluster investigations, but rarely analyze data in response to cluster investigations.

3.REFERRAL AND DIRECT SERVICES Birth Defects Program ActivityPercent (#) Sends case information to the LHD for connecting children to service providers 39.1% (9) Contacts families directly to inform them of services available 39.1% (9) Contacts providers directly to inform them of services available 34.8% (8) Conducts other referral activities47.8% (11) Works with LHDs/regional offices to plan for services needed at the local level 26.1% (6) n = 23

3.OTHER REFERRAL ACTIVITIES Refer parents/affected families directly to all potential assistance, including Health Department services Referrals to genetics program (NTD recurrence prevention); Early Intervention and Genetic Evaluation Developed educational materials for use at hospitals and clinics that include information regarding available services Referrals to local/regional offices of CSHCN programs for case management and referrals

4.RESOURCES Birth Defects Program ActivityPercent (#) Provides a list (fact sheet) of community resources that are available 39.1% (9) Provides a list of current specialists, service providers and/or clinics that treat children with special conditions 21.7% (5) Provides materials/fact sheets that LHDs can use for referral/prevention activities 56.5% (13) n = 23

5.PREVENTION Birth Defects Program ActivityPercent (#) Works with LHDs to promote Neural Tube Defects prevention through folic acid use (e.g., distribution of materials; multivitamins participation in community fairs/events; advertising) 73.9% (17) Works with LHDs to promote birth defects prevention beyond folic acid (e.g., preconception; alcohol use/FAS) 60.9% (14) n = 23 Other prevention activities: promote January BD Prevention, provide data to assess trends, provide professional education, participate on folic acid task force and mass media tours

6.DATA REQUESTS/AVAILABILITY Birth Defects Program Activity QuarterlyAnnuallyRarely Receives data requests from LHDs/ Regional Office (47.8%, n=11) 7.1% (1) 42.9% (6) 50.0% (7) Birth defects data can be obtained from the program’s website (56.5%, n = 13) NA Types of data requested/provided to LHDs: prevalence data, counts and rates of specific birth defects (e.g., neural tube defects), cluster concerns, utilization rates for hospital.

6.DATA REQUESTS: BIRTH DEFECTS PROGRAM TO LHDs Birth Defects Program Activity QuarterlyAnnuallyRarely Requests data from LHDs/ Regional Office (34.8%, n=8) 50.0% (5) 10.0% (1) 40.0% (4) Types of Data Requested By Birth Defects Programs From LHDs: reports from any LHD that has provided care or services to a child diagnosed with a reportable condition, all cases of neural tube defects to the Birth Defects Program, service referrals and outcome information (status of cases that were referred to local county agencies for follow-up or services provided to families)

OTHER ENTITIES THAT PROVIDE SERVICES AT THE LOCAL LEVEL State MCH and/or CSHCN programs CSHCN case management units located in LHDs Specialty clinics, genetic centers, regional perinatal centers. Local private health care practitioners State and county health department programs (WIC, family planning clinics) provide folic acid education; distribute multivitamins to low-income women The state medical school has a program to provide pediatric care to children with special health care needs All local county health departments provide some form of prevention or referral services Federal and State Healthy Start Coalitions March of Dimes, ARC chapters, Family Voices, parent support programs, local hospitals, Early Intervention, Human Services/Social Work Services

OTHER SERVICES WOULD LIKE TO SEE AT LOCAL LEVEL Additional materials/fact sheets to LHDs for birth defects causes and prevention More services are needed in general -- lack of specialists (e.g. geneticists) is a problem Assure screening and counseling for adequate folic acid intake are routinely provided at all prenatal visits Birth defects should be included in state and local MCH reports Protocols for local public health staff to provide follow up to families who have had an NTD affected pregnancy Service utilization provided by private insurance