Transcript evaluating an ehdi system: parent survey project

EVALUATING AN EHDI SYSTEM:
PARENT SURVEY PROJECT
Vickie Thomson, MA
State EHDI Coordinator
Colorado Department of
Public Health and
Environment
Janet DesGeorges
Colorado Families for
Hands and Voices
Faculty Disclosure Information
In the past 12 months, I have not had a significant financial interest
or other relationship with the manufacturer(s) of the product(s) or
provider(s) of the service(s) that will be discussed in my presentation.
This presentation will (not) include discussion of pharmaceuticals or
devices that have not been approved by the FDA or if you will be
discussing unapproved or "off-label" uses of pharmaceuticals or devices.
Funding Source
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Centers for Disease Control and
Prevention with Massachusetts
(UR3/CCU118857-03) and Colorado
(UR3/CCU818868-04) under PA 00076Early Hearing Detection and Intervention
(EHDI) Tracking, Research, and
Integration with Other Newborn
Screening Programs
Project Awards
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State Health Department EHDI Programs
 Massachusetts Childhood Hearing Data
System
 Colorado Newborn Evaluation Screening
and Tracking
 Population of data begins with electronic birth
certificate in both states
 includes demographic, risk indicator, and
diagnostic information
Objectives
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Conduct a pilot study of families’ satisfaction
and anxiety levels
Determine the levels of families’ satisfaction
and anxiety
Assess whether or not a child’s hearing status
affects the levels of satisfaction
Examine other factors affecting the levels of
satisfaction
Revise the three survey tools based on pilot
Goals
Pilot Survey of Families’ Satisfaction with the
EHDI Process
 Pilot study that can be used by other states to
evaluate the effectiveness of their EHDI Project
 Contribute to the national EHDI Goals of
providing effective family-centered services
 Identify strengths and weaknesses in state
EHDI systems
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Instruments Developed
Invitation letter
 Three surveys (passed screen, passed
out-patient, and diagnosed with hearing
loss)
 Translations of all documents into
Spanish, including back translation to
ensure cultural competency
 State specific questions added at the
end of surveys
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Protocol Summary
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Pilot Study (Massachusetts and
Colorado)
Families whose children passed an initial
screen (group 1)
 Families whose infant referred on initial
screen, but passed out-patient (group 2)
 Families with infants who are identified with
permanent hearing loss (group 3)
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Parents Concerns
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Parents should be present for the screening.
Parents should not be given a card when their
baby fails but face to face contact with
someone who knows the system
Immediate contact with family support
All families should have access to hearing
aids, not just families who have Medicaid
My physician told me not to go back for a
rescreen since this test is designed to scare
parents!
Positive Feedback
from Parents
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Thank you for having the newborn hearing
test. My son’s result led to re-testing and
enrolling in EI. Your process is working great.
 I am grateful for the screening program. My
son only has hearing loss in one ear so if he
was never screened we would not know he
has a hearing loss and would have missed out
on EI.
 Parent support was the best help!!
Who Really Helps?
Parents report that physicians and ENT’s
were the least helpful
 Audiologists and the Colorado Hearing
Resource Coordinator were the most
helpful
 Part C Coordinator somewhat helpful
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Next Steps
Amend program protocols to incorporate
feedback from families
 Analyze and publish the results
 Refine survey instruments
 Make surveys available to states and
territories
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Next Steps
Educate the Medical Homes on the
importance of the EHDI processes
 Provide guidance to Part C coordinators
 Reach out to the ENT’s on the
importance of ‘pediatric’ audiology
assessment and referral
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Factors Affecting Hospital
Programs
Survey of Hospital Coordinators
 Survey of Screeners
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Type of equipment
 Protocol for screening
 Protocol for follow-up
 Administrative support
 Training Needs
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Factors Associated with Missing
a Hearing Screen
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Low birth weight
Low APGAR scores
Low maternal wgt
gain
Mothers’ education
Smoking
Marital status
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Mothers’ age at birth
Infant gender
Race
Urban vs. Rural
Year of birth
Hospital
PARENT POWER
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Parent’s are the
most critical element
in helping create a
sustainable, quality
EHDI system that
meets the needs of
the children and
families we serve!