Evaluating Families Satisfaction with EHDI in Massachusetts Jessica MacNeil, MPH Massachusetts Department of Public Health Boston, MA

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.

Snapshot of Massachusetts 80,000 births annually 220 children diagnosed with hearing loss annually 52 birth facilities 26 DPH-approved audiological diagnostic centers (ADCs) 62 Early Intervention (EI) programs

Massachusetts Statistics* 99% screening rate 1% refer rate 89% receive diagnostic evaluation** 75% receive EI services *Data are based on birth cohort. **Data are based on reports from DPH-approved ADCs only.

Background Benefits of early identification of hearing loss in the areas of speech, language, and cognitive outcomes well documented Little research on the effects of the EHDI process on families Develop a tool for states to evaluate the quality of EHDI services for families

Objectives To determine the levels of families’ satisfaction and anxiety associated with the EHDI process To determine what factors affect families satisfaction levels with the EHDI process To assess whether or not a child’s hearing status affects the levels of satisfaction

Partners Partners: –Colorado (CO) Infant Hearing Program –Centers for Disease Control and Prevention (CDC) EHDI Program Collaboration: –Protocol and survey development –IRB waiver process –Pilot survey project

Products Developed Invitation letters Surveys Translations of surveys and invitation letters into Spanish Microsoft Access databases SAS programs

Survey Design Pool of questions from other studies developed by the Family Issues Committee MA and CO, with technical assistance from CDC, selected and modified questions to address project objectives Surveys were coded to allow linkage with state EHDI systems Parents were directly involved in survey development

Study Groups Group 1: Families whose newborn passed their initial hearing screening Group 2: Families whose infants refer on their initial screening but subsequently pass on outpatient re-screen or diagnostic evaluation Group 3: Families whose infants are identified with permanent hearing loss

Sampling Period Group 1: –January 1, July 1, 2004 births Group 2: –January 1, July 1, 2004 births Group 3: –January 1, April 30, 2004 births

Response Rate / Sample Size Group 1: –1,200 sent (56 Spanish) –328 returned (2 Spanish), 27.3% (Final sample size: 748) Group 2: –2,545 sent (123 Spanish) –643 returned (12 Spanish), 25.3% (Final sample size: 223) Group 3: –393 sent (24 Spanish) –135 returned (4 Spanish), 34.4% (Final sample size: 135) Total: –4,138 sent (203 Spanish) –1,106 returned (18 Spanish), 26.7%

Satisfaction with Screening Services

How did you feel when you first learned that your baby would have his or her hearing screened?

When you learned the results of your baby’s hearing screening, how did you feel?

What you were told to do next was….. Group 2: 83% reported that it was clear what they should do next after the screening Group 3: 90% reported that it was clear what they should do next after the screening

Satisfaction with Re-testing Services

How did you feel when you first learned that your baby would have his or her hearing re-tested?

When you learned the results of your baby’s outpatient hearing re-testing, how did you feel?

Time until first re-testing appointment

Number of outpatient re-testing appointments

Satisfaction with Audiologist

Was the information you were given about intervention/communication options equally presented? 60% The information was unbiased 19% The information was somewhat unbiased 16% The information was somewhat biased 5% The information was very biased

Looking back at the activities involved in finding out that your child had a hearing loss, did the benefits outweigh the negatives?

Early Intervention Enrollment 81% Receiving EI services 19% Not receiving EI services

Satisfaction with EI

Family Members with Childhood Hearing Loss Group 1: 10% Group 2: 15% Group 3: 28% Health Problems and Special Needs Group 1: 15% Group 2: 18% Group 3: 28%

Were you informed that hearing loss can develop at any time and that concerns should be discussed with your doctor? Group 1: –Yes: 39% –No: 61% Group 2: –Yes: 51% –No: 49%

Parent Concerns Parents should be present for the screening. We live in a rural area and have to wait long periods of time to see audiologists and the ENT. We 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. There needs to be more advocacy for insurance companies to cover at least some of the expenses for hearing aids.

Positive Feedback 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. We wish all states approved this law. All babies deserve this early start.

If you had another baby, would you want him or her to have his or her hearing screened? Group 1 = 99% Group 2 = 99% Group 3 = 98%

Additional Survey Topics Parental knowledge and understanding of the EHDI process Timing and delivery of services and results Barriers to service Timing and receipt of information Additional questions on satisfaction and parental attitudes toward screening

Limitations Selection bias Recall bias Qualitative data Small sample size (Group 2 and 3)

Lessons Learned To improve response rates surveys should be sent soon after birth Build in as program evaluation activity to avoid administrative delays Additional efforts needed to increase participation among diverse groups-- only 9% of Spanish surveys returned

Conclusions Overall, families are satisfied with the EHDI services they receive in Massachusetts Parents support universal newborn hearing screening Most children with hearing loss are receiving EI services

Next Steps Developing final report and manuscript for peer-reviewed publication Distributing surveys to other states Utilizing survey feedback to improve our program and families experience with EHDI in Massachusetts

Acknowledgments Janet Farrell, UNHSP Director Chia-Ling Liu, Research and Evaluation Specialist Sarah Stone, UNHSP Coordinator Martha deHahn, Parent Outreach Specialist Nancy Wilber, Principal Investigator Roger Wong, Data Entry Amarilys Triana, Outreach Specialist Colorado Infant Hearing Program Centers for Disease Control and Prevention (CDC) EHDI Program

Massachusetts Universal Newborn Hearing Screening Program