1. Parental Satisfaction and Anxiety Following Newborn Hearing Screening Referrals in Utah Linda D. Goetze, Catherine C. Groseclose, Scott Grosse, Karl R. White, and Kay W. Hansen Early Intervention Research Institute Utah State University Logan, UT 84322-6580 www.eiri.usu.edu Linda.Goetze@usu.edu Presented at: National Early Hearing Detection and Intervention Conference Washington, DC February 19, 2004

2. Overall Project Outline  Maintained cost web page: www.ehdicost.org  Family Survey—Completed Year 1 data collection activities and began Year 1 data analyses; began Year 2 data collection  Hospital Data Collection—Initial hospital cost and time diary data collection completed with 8 Utah hospitals; began hospital cost data analyses  Diagnostic Cost—Finalize methodology and sample, collect data

3. Family Surveys  Diagnostic survey FFF (n = 52)  Outpatient survey FFP (n = 37)  Inpatient survey FP (n = 44)

4. Family Survey Results  Descriptives  Parental Satisfaction and Anxiety Cohort Differences –analysis of variance –controlling for insurance differences, income, and parents’ education  Results Summary

5. Mean Baby Stay in Hospital After Being Born Hours Between Cohort Differences p <.01

6. Percentage of Babies in NICU Between Cohort Differences p <.001 2% 14% 33%

7. Percentage of Respondents Who Knew Baby was Screened for Hearing Loss Between Cohort Differences n.s. 98% 95% 100%

8. Household Income Before Taxes (n = 119) Number of Cases Mean = 6.8 (~ $35,000) SD = 2.4 1 = Less than $5,000 2 = $5,000 - $9,999 3 = $10,000 - $14,999 4 = $15,000 - $19,999 5 = $20,000 - $24,999 6 = $25,000 - $34.999 7 = $35,000 - $44,999 8 = $45,000 - $54,999 9 = $55,000 - $64,999 10 = $65,000 - $74,999 11 = > $75,000

9. Education of R and Partner (n = 133) Number of Cases Mean = 7.1 SD = 3.0 1 = Less than 12 years 2 = High School Diploma 3.5 = Technical Degree 3.5 = 2 Year Associate Degree 5 = College Degree 6 = Graduate/Post-College

10. Type of Insurance by Cohort No insurance n = 5 3.8% Medicaid n = 44 33.8% Private ins n = 81 62.4%

11. After all screening was complete, how did you feel...? Mean Score: Glad hearing screening was done at this hospital Between Cohort Differences n.s. 1 = Strongly disagree 5 = Strongly agree

12. Tell us about your experience in getting the screening test while a patient at the hospital. The screening test was carefully explained to me. Between Cohort Differences p <.05 1 = Strongly disagree 5 = Strongly agree

13. Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital? Very worried – Not worried Between Cohort Differences p <.05 1 = Very Worried 5 = Not Worried

14. Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital? Not Supported – Supported Between Cohort Differences p.054 1 = Not supported 5 = Supported

15. Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital? Between cohort differences controlling for other variables p <.01 Average household income = 6.8 Average education of R and partner = 7.1 1 = Not Supported 5 = Supported Adjusted Means No insurance n = 5 Medicaid n = 36 Private ins n = 69

16. Angry - Calm Between Cohort Differences p <.01 1 = Angry 5 = Calm Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital?

17. Between cohort differences controlling for other variables p <.01 Average household income = 6.8 Average education of R and partner = 7.1 1 = Angry 5 = Calm Adjusted Means No insurance n = 5 Medicaid n = 36 Private ins n = 69

18. Confused - Confident Between Cohort Differences p <.01 1 = Confused 5 = Confident Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital?

19. Between cohort differences controlling for other variables p <.05 Average household income = 6.8 Average education of R and partner = 7.1 1 = Confused 5 = Confident Adjusted Means No insurance n = 5 Medicaid n = 36 Private ins n = 69

20. After all screening was complete (before diagnosis was done), how did you feel? Worried about my baby’s hearing. Between Cohort Differences p <.000 1 = Strongly disagree 5 = Strongly agree

21. Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital? Worried about my baby’s hearing. Between cohort differences controlling for other variables p <.01 Average household income = 6.8 Average education of R and partner = 7.1 1 = Strongly disagree 5 = Strongly agree Adjusted Means No insurance n = 5 Medicaid n = 36 Private ins n = 69 1.17

22. After all screening was complete (before diagnosis was done), how did you feel? Confident about what to do next. Between Cohort Differences p <.000 1 = Strongly disagree 5 = Strongly agree

23. Before you and your baby left the hospital, how did you feel when you were told your baby needed another screening after discharge from the hospital? Confident about what to do next. Between cohort differences controlling for other variables p <.01 Average household income = 6.8 Average education of R and partner = 7.1 1 = Strongly disagree 5 = Strongly agree Adjusted Means No insurance n = 5 Medicaid n = 36 Private ins n = 69 4.92

24. How much do you earn per hour (before baby)? Between Cohort Differences n.s.

25. How much do you earn per hour (after baby)? Between Cohort Differences p.059

26. Family Survey Results Summary  Overall respondent ratings of screening were positive  Respondents with babies diagnosed with hearing loss felt less supported, more worried, less confident, less calm, and more confused than respondents in the other cohorts.  Even after controlling for level of education, income, and insurance differences, these cohort differences remained.  When education, income, and insurance differences were included in the multivariate analysis, only the cohort was statistically significant in explaining parental satisfaction and anxiety.  Does this imply that the concerns about the negative effects of “false positive” impacts on families are negligible?  What can staff involved in screening and diagnosis do to improve how families feel about the process?

27. Family Survey Results Summary (continued)  Differences were suggested in wage rate of respondents with diagnosed babies after the baby was born compared to families with babies who did not have a diagnosed hearing loss  ….yet no significant differences in hourly wage between groups reported prior to the baby’s birth  All but one inpatient who did not return to work have very low hourly wage rates before baby was born (lower average income)  Data suggest that mothers with high wages and very low wages are less likely to return to work after their baby is born  At least two diagnosed who left work did so because of the baby’s diagnosis; one father of a diagnosed infant was fired because he spent “too much time at the hospital”  A larger sample may clarify reasons for the changes in hourly rates

28. Suggestions Suggestions about improvement of the project are welcome. Please email Dr. Linda Goetze about any suggestions for the cost study at: E-Mail: Linda.Goetze@usu.edu