1. Evaluating an EHDI System: Parent Survey Project 2005 Early Hearing Detection and Intervention Conference March 2005 Atlanta, Georgia

2. Funding Source zCenters 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

3. Project Awards zState Health Department EHDI Programs yMassachusetts Childhood Hearing Data System yColorado Newborn Evaluation Screening and Tracking zPopulation of data begins with electronic birth certificate in both states yincludes demographic, risk indicator, and diagnostic information

4. Project Overview zLiterature Review zExploratory Study zTwo main questions yWhat are the levels of families satisfaction and anxiety associated with the EHDI process? yWhat factors affect families satisfaction levels with the EHDI process?

5. Family Involvement zFamilies are the primary stakeholders yColorado and Massachusetts included parents in each phase of development of the study zFamilies reviewed and approved study questions zInstrumental in developing hypotheses after analysis of the preliminary results zSupport provided to parents throughout the study process when requested

6. Objectives zConduct a pilot study of families satisfaction and anxiety levels zDetermine the levels of families satisfaction and anxiety zAssess whether or not a childs hearing status affects the levels of satisfaction zExamine other factors affecting the levels of satisfaction zRevise the three survey tools based on pilot

7. Goals zPilot Survey of Families Satisfaction with the EHDI Process zPilot study that can be used by other states to evaluate the effectiveness of their EHDI Project zContribute to the national EHDI Goals of providing effective family-centered services zIdentify strengths and weaknesses in state EHDI systems

8. Instruments Developed zInvitation letter zThree surveys (passed screen, passed out-patient, and diagnosed with hearing loss) zTranslations of all documents into Spanish, including back translation to ensure cultural competency zState specific questions added at the end of surveys

9. Protocol Summary zPilot Study (Massachusetts and Colorado) yFamilies whose children passed an initial screen (group 1) yFamilies whose infant referred on initial screen, but passed out-patient (group 2) yFamilies with infants who are identified with permanent hearing loss (group 3)

10. Design zPool of questions from other studies, including Families Issues Committee zMA and CO, with technical assistance from CDC, modified questions and developed surveys Surveys coded and can be linked with state EHDI systems zStratified random sample zover-sampled minority populations yincreases analytical capacity for subgroups

11. Surveys and Project Period zDistributed by mail yGroup 1: 1,200 sent x born January 1, 2004 - July 1, 2004 yGroup 2: 1,200 sent xborn January 1, 2004 - July 1, 2004 y Group 3: 400 sent x born January 1, 2002 - April 30, 2004 zFollow-up telephone calls performed for group 3 only zResponse rate approximately 25% for all 3 groups

12. Parents Concerns zWe live in a rural area and have to wait long periods of time to see audiologists and the ENT. zWe were given very mixed messages at the hospital at the time of screening. There needs to be improved training on how to talk with parents. zThere needs to be more advocacy for insurance companies to cover at least some of the expenses for hearing aids. zParents should be present for the screening.

13. Positive Feedback from Parents zThank you for having the newborn hearing test. My sons result led to re-testing and enrolling in EI. Your process is working great. zI 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. zWe wish all states approved this law. All babies deserve this early start.

14. Next Steps zAmend program protocols to incorporate feedback from families zAnalyze and publish the results zRefine survey instruments zMake surveys available to states and territories

15. Investigators and Collaborators zVickie Thomson, MA, Colorado Infant Hearing Program zJanet DesGeorge, Families for Hands and Voices zNancy Wilber, EdD, Massachusetts Department of Public Health zJanet Farrell, BA, MA Newborn Hearing Screening Program zChia-Ling Penny Liu, Sc.D., MA Newborn Hearing Screening zSarah Stone, BBA, MA Newborn Hearing Screening zJessica MacNeil, MA, MPH, Newborn Hearing Screening