Transcript Interactions Between Birth Defects Programs and Local

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
1-25-07
NBDPN SURVEY DEVELOPMENT GROUP
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•
•
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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
n = 43
2.3
44.2
No
(n = 19)
Unknown
(n = 1)
Yes
(n = 23)
53.5
“Does your State Birth Defects Program directly interact with
local health departments/regional offices?”
DIRECT INTERACTIONS BETWEEN STATE
BIRTH DEFECTS PROGRAMS AND LHDs
1. Data Dissemination and Utilization
2. Cluster Investigation
3. Referral and Direct Services
4. Resources
5. Prevention
6. Data Requests/Data Sharing
1.
DATA DISSEMINATION AND UTILIZATION
n = 22
Frequency
BD Program Activity
Ongoing
1 or
2/yr
Rarely
On
Never
Request
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)
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
n = 23
Birth Defects Program Activity
Percent (#)
Sends case information to the LHD for
connecting children to service providers
Contacts families directly to inform them
of services available
Contacts providers directly to inform
them of services available
Conducts other referral activities
39.1% (9)
Works with LHDs/regional offices to plan
for services needed at the local level
39.1% (9)
34.8% (8)
47.8% (11)
26.1% (6)
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
n = 23
Birth Defects Program Activity
Percent
(#)
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
Provides materials/fact sheets that
LHDs can use for referral/prevention
activities
21.7% (5)
56.5% (13)
5.
PREVENTION
n = 23
Birth Defects Program Activity
Percent
(#)
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)
Works with LHDs to promote birth defects
prevention beyond folic acid
(e.g., preconception; alcohol use/FAS)
73.9% (17)
60.9% (14)
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
Receives data requests
from LHDs/ Regional
Office (47.8%, n=11)
Birth defects data can be
obtained from the
program’s website
(56.5%, n = 13)
Quarterly
Annually Rarely
7.1%
(1)
42.9%
(6)
50.0%
(7)
NA
NA
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
Requests data from
LHDs/ Regional Office
(34.8%, n=8)
Quarterly
Annually
Rarely
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