evaluating an ehdi system: parent survey project vickie thomson, ma state ehdi coordinator colorado...
TRANSCRIPT
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) orprovider(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 bediscussing unapproved or "off-label" uses of pharmaceuticals or
devices.
Funding Source
Centers for Disease Control and Prevention with Massachusetts (UR3/CCU118857-03) and Colorado (UR3/CCU818868-04) under PA 00076-Early Hearing Detection and Intervention (EHDI) Tracking, Research, and Integration with Other Newborn Screening Programs
Project Awards
State Health Department EHDI Programs Massachusetts Childhood Hearing Data
SystemColorado Newborn Evaluation Screening
and Tracking Population of data begins with electronic birth
certificate in both states includes demographic, risk indicator, and
diagnostic information
Objectives
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
Instruments Developed
Invitation letterThree 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
Protocol Summary
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)
Parents Concerns
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 Feedbackfrom Parents
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
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
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
Factors Affecting Hospital Programs
Survey of Hospital CoordinatorsSurvey of Screeners
Type of equipmentProtocol for screeningProtocol for follow-upAdministrative supportTraining Needs
Factors Associated with Missing a Hearing Screen
Low birth weight Low APGAR scores Low maternal wgt
gain Mothers’ education Smoking Marital status
Mothers’ age at birth Infant gender Race Urban vs. Rural Year of birth Hospital
PARENT POWER
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!