1. A Comprehensive Analysis of an EHDI Program: A Retrospective Study Vickie Thomson, MA EHDI Program Manager Colorado Department of Public Health and Environment

2. Acknowledgements The Colorado Infant Hearing Program would like to express its gratitude to the Center s for Disease Control and Prevention for entering into a cooperative agreement to build and maintain a surveillance infrastructure (RFA 05028). Vickie would like to thank Mathew Christensen, PhD, Stat Analyst and Bill Letson, MD for their vision, support and assistance with this analysis

3. The Role of Public Health in EHDI Programs Public Health criteria for population based screening Easy Not detected by other means Interventions available Results in improved outcomes Acceptable cost

4. 10 Essential Public Health Services

5. Program Evaluation for CDC s Operating Principles Using science as a basis for decision- making and action; Expanding the quest for social equity; Performing effectively as a service agency; Making efforts outcome-oriented; and Being accountable

6. Research or Evaluation? State hypothesis Collect data Analyze data Draw conclusions Engage stakeholders Describe the program Focus the evaluation Gather credible evidence Justify conclusions Ensure use and share lessons learned

7. Framework for Program Evaluation

8. Analyzing an EHDI Program Advisory Committee Improve follow-up Factors associated with missing the screen, rescreen, & late diagnosis Data integration, hospital surveys Conclusions Plan and implement programmatic changes for improvement

9. The Colorado EHDI Follow-up Program: A Historical Perspective

10. Factors that Influenced Improved Follow-up Rates Pressure from the Pediatric Chapter Champion - Al Mehl, MD Integration with the EBC Track from screening to diagnosis to early intervention Send accurate MONTHLY reports to hospital coordinators Letter campaign to parents from missed, failed screens (EBC provides demographic information)

11. Colorado Infant Hearing Program Factors that Affect Screening and Follow-up Rates

12. Factors Initially Tested Mothers age Mothers education Mothers weight gain Martial status Gestational age Mother Smoke Infant gender Race/ethnicity Hospital Year of birth Birth weight APGAR Scores Urban, rural, frontier populations

13. Population Results from Hospital Screen Births 2001-2004204,694 Screened 200,666 (98 %) Failed8,124 (4%) Rescreened6,686 (82%)

14. Explaining Initial Screening Rates 2002-2004ScreenedNot Screened Total Hospital Births Hospitals > 98% (N=31) Birth weight >2500 gms >7 on APGAR5 195,208 132,741 (68%) 177,639 (91%) 193,255 (99%) 3,712 1,373 (37%) 2,301 (62%) 2,969 (80%) <2500 Grams & <7 on APGAR5 529 (.26%)692 (17%)

15. USPSTF and NICU Screening The USPSTF found good evidence that the prevalence of hearing loss in infants in the newborn intensive care unit and those with other specific risk factors is 10-20 times higher than the prevalence of hearing loss in the general population of newborns. Both the yield of screening and the proportion of true positive results will be substantially higher when screening is targeted at these high-risk infants …

16. Conclusions Lack of reporting results Early discharge Significant health problems Out of state residents (7%) Deceased

17. Recommendations Presentations and education to neonatologists Enhanced tracking for transfers Enhanced protocols for NICU s Letters to the medical home/PCP

18. Explaining Current Follow-up Rates with Birth Certificate Data 2002-2004ScreenedNot Screened Total 8,1246,686 (82%)1,438 (18%) Mom Educ 13+ Latino 39% 42% 27% 45% Age at Birth 25+60%50% Smoked9%13% Hospital >82% (N=28)54%29%

19. Rescreen Percents by Race, Education, and Hospital Program

20. Percent Rescreened by Race/Ethnicity and Hospital Grouping

21. Hospital Survey Data 1. What is the highest level of care is offered in your hospital? 2. Is an audiologist involved with your hospitals screening program? 3. Level of audiology involvement 4. Who provides the screening? 5. Type of Screening equipment used: 6. Does your hospital provide the outpatient rescreen? 7. For infants that do not pass the initial hearing screen, does your program set up an appointment for a follow-up rescreen prior to discharge? 8. Is there a charge assessed for outpatient rescreening?

22. 2005 Stats Births = 69,487 Screened = 67,451 (97%) Not Passed = 3,154 (4.7%) Rescreened = 2,629 (83.4%) Confirmed Hearing Loss = 128

23. Demographic for Follow-up Screens Not Passed = 3,154 (4.7%) 11 Hospitals = 100% Birth Range = 2,4048 - 24 11 Hospitals < 70% Birth Range = 2,729 - 134

24. Variables Technology AABR = 60% OAE = 12% AABR/OAE = 30% Who Screens? Nurses, Medical Assistants, Techs = 58% Volunteers = 30% Audiologists =.5% Contract = 12%

25. Audiologist Involvement 50% report they have audiology involvement Consultant to screening 71% of the infants who failed were born in hospitals affiliated with an audiologist

26. Follow-up Appointment Does your Program set up an appointment for infants who fail? Yes before discharge = 42% No, after discharge = 14% Parents responsibility = 43% Which infants are more likely to receive the follow-up?

27. Follow-up Protocol Does your hospital provide the outpatient rescreen? Return to the nursery = 52% Return to audiology in the same hospital = 48% Return to audiology different campus = 2% Do not return to hospital =1% Will the protocol affect the return percent? Charge? 50% yes, 50% no

28. Failed Screens and Diagnostic Follow-up What factors are associated with an infant who fails newborn hearing screening and rescreen yet not confirmed with hearing loss by three months of age?

29. Variables for Analysis Co morbidities – link to birth defects registry Hospital factors Race Ethnicity Gender Mother s age Mother s education Mother s marital status

30. The Role of Public Health Research Based Plans Identify the gaps and educate the medical homes on the importance of follow-up for the NICU and Latino infants Develop strategies to assist hospitals with protocols to capture these populations Work with communities to ensure a seamless transition from screening into appropriate diagnostics

31. The Role of the Medical Home Included in the hospital recommended protocol and informed of the steps Informed regarding every outcome from screening, diagnostics, and EI

32. The Role of our Federal Partners Continuing to raise the bar for EHDI programs Encourage data integration with newborn screening and immunization Support the concept of the child health profile to ensure the Medical Home/PCP are informed of outcomes

33. Outcomes: Happy, Healthy Families Comprehensive Culturally Competent Seamless Knowledgeable Providers Parent to Parent Support