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!