1. 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

2. 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.

3. 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

4. Project Awards 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

5. 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

6. 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

7. 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

8. 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)

9. 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!

10. Positive Feedback from 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!!

11. 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

12. 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

13. 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

14. Factors Affecting Hospital Programs Survey of Hospital Coordinators Survey of Screeners Type of equipment Protocol for screening Protocol for follow-up Administrative support Training Needs

15. 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

16. 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!