An Analysis of “Lost To Follow-up” Infants

1. An Analysis of “Lost To Follow-up” Infants Les R. Schmeltz, Au.D. NCHAM Mississippi Bend AEA-Iowa

2. Lost To Follow-Up • Not screened or rescreened by 6 mos. • Rescreened, non-pass, no further data • Diagnostic evaluation, no further data • Diagnosis, no early intervention • No additional information beyond birth data

3. State of Iowa • Screening & reporting voluntary until 2004 • Grantees required to report to IDPH • Some hospitals reported to IDPH using computer software • Other hospitals reported to AEAs • A few used data for internal follow-up

4. State of Iowa-2002 • 37,555 live births • 95% of babies screened for hearing loss • IDPH receiving data on less than 50% • Most data to IDPH only initial screening results • Tracking and follow-up spotty

5. 1/1/04 Iowa Mandate • Requires all babies to be screened for hearing loss prior to discharge from the newborn nursery • Requires all screening results be reported to IDPH • Requires all follow-up testing be reported to IDPH

6. State of Iowa • Web-based Data Management System • Implementation pending • Will start in largest hospitals • All birthing facilities reporting • Hospitals reporting on paper data sheets • Early Access Coordinators to track • Diagnostic centers report testing results

7. AEA 9 • 9 % of births in Iowa • 5 birthing facilities • 4 service area offices • 3 Early Childhood Audiologists • Diagnostic ABR in one facility

8. GHS • 2300 births/year, well baby + NICU • Paid screeners, OAE • Audiologist on staff • Reports initial & follow-up data to AEA • Follow and track babies to age 3 months • Joint follow and track with AEA >3 mos.

9. MHS • 500 births/year, well baby only • Nurses screen, OAE • Initial screening results to AEA • Follow-up & tracking by AEA • AEA office in town, local audiologist

10. UHS • 400 births/year, well baby only • Nurses screen, OAE • Initial screening results to AEA • Follow-up & tracking by AEA • AEA office in town, AEA audiologist 1 day per week

11. JCPH • <100 births/year, well baby only • Nurses screen, OAE • Initial screening results to AEA • Follow-up & tracking by AEA • AEA office in town, AEA audiologist 1 day per week

12. THS • <50 births/year, well baby • Nurses screen, OAE • Initial screen results to IDPH • Inconsistent reporting to AEA • ? follow-up & tracking on babies • Opening new facility in February

13. AEA • Universal screening at 4 hospitals since 1998 • Results reported to AEA using Hi*Track system • AEA sends letters and reports for 3 of 4 • AEA picks up follow-up at 3 mos. for 4th

14. Data to IDPH • Initial screening data from all hospitals sent to IDPH using Hi*Track system • Follow-up and tracking information updated automatically • Data sent monthly by email • Presently over 25,000 babies in system

15. Tracking Process • Initial results letter to parents/PCP • GHS generates and provides to parents at discharge, sends to PCP • Other hospitals inform parents after screening • Letters sent to parents and PCP by AEA • Parents also receive Early Childhood Services brochure with letter

16. Tracking Process • Follow-up Letters • At 1 month for out-of-state babies, advising follow-up in home state • At 2 and 3 months for unilateral refers/missed • At 2, 3 and 4 months to parents of non-pass babies • To physician at 2 and 4 months for all non-pass babies

17. Tracking Process • Telephone follow-up • At >4 mos. for all non-pass babies • To all families and PCP for babies rescreened and still non-pass • As indicated by individual situation

18. Tracking Process • Remote Site Testing • Community Health Clinic rescreening some babies, faxing results • Early Head Start starting hearing screening program • Early learning programs require hearing screen

19. Population Demographics

20. Population Demographics %

21. Population Demographics

22. Population Demographics %

23. Population Demographics

24. Population Demographics

25. “Lost To Follow-Up” • Parents contacted, no response • Moved, no forwarding address • Out-of-state • No concerns

26. No Response • No concerns about hearing, but do not report • Language issues with letters • Lack of transportation • Family issues • Forgot to follow-up • Inconvenient location or times for testing

27. No Response • Cost, or perceived, cost • Medical issues (chronic OM, etc) • Physician advised against testing • No perceived urgency for follow-up • Parents unaware baby could be tested • Baby no longer in home

28. No Response • Don’t understand the importance of baby hearing properly • Intended to make appointment, just “never got around to it.” • Baby had other, more pressing, issues • Parents mentally or developmentally challenged

29. MNFA • Letters returned marked MNFA • Telephone disconnected or unable to locate phone number (cell phone) • Physician unable to locate or unknown

30. Out-of-state • Mostly Illinois babies born in Iowa • Initial results letters go to family • Second letter advising follow-up at facilities in the area • Card enclosed to report results back to our system

31. No Concerns • Baby appears to be responding appropriately to sounds • Unclear to parent that mild loss may exist even with “good” responses • Family sees what they feel are normal responses • Physician not concerned about loss

32. Referrals • “Lost To Follow-up” seen later: • Speech delay or distortion • Frequent episodes of OM • Parent concern about responses • Enrolling in program • Physician concerns • High risk or family history

33. Lost After Diagnosis • Parents skeptical of diagnosis or “shopping” for better news • Child stuck in “medical process” • Parents could not accept that child may have a problem • Not convinced early intervention is necessary or helpful

34. Lost After Diagnosis • Family issues (divorce, job loss,etc.) • Finances • Cost of device recommended • Perceived cost of services • Cost of participating in programming • Left area

35. What Can We Do? • Immediate, meaningful contact with family • Rescreen appointments made prior to hospital discharge • Make initial phone contact soon after letters go out • Telephone reminders for appointments

36. What Can We Do? • Be more persistent! • More frequent phone calls & letters • Offer alternative screening sites • Offer in-home screening services if necessary • Involve physician much earlier in the process

37. What Can We Do? • Appoint a case manager • Smaller number of cases allows time for closer follow-up and more frequent contact • A consistent point of contact for the family to access all services

38. What Can We Do? • Involve other agencies • Community health clinics • Visiting or public health nurses • Day care providers • Early Head Start • Physicians groups • Social service agencies

39. What Can We Do? • Incentives for follow-up • Baby Sleep CD or cassette • Baby packet of useful items • Possible tie-in with other agencies • Classes, language groups, etc. • Pay family expenses for appointment • Provide transportation where necessary

40. Your Ideas? • What has worked for your program? • How can we adapt your successes? • What can we all learn from each other?