Measuring Follow-up in EHDI : The need for standardization

1. Measuring Follow-up in EHDI : The need for standardization Marcus Gaffney, MPH Denise Green, MPH Scott Grosse, Ph.D Craig Mason, Ph.D March 2007

2. Overview • The Joint Committee on Infant Hearing (JCIH) recommended that programs • Document efforts to obtain follow-up on a minimum of 95% of infants who do not pass the hearing screening • Achieve a minimum return-for-follow-up rate of 70% (2000, p.803) • CDC – Government Performance & Results goal: • “By 2010, decrease to 10 the percentage of newborns that screen positive for hearing loss but are lost to follow-up” (Department Health and Human Services, p. 268)

3. Why is Follow-up important? • The potential benefits of hearing screening are reduced when children with abnormal results do not obtain the recommended follow-up tests that are needed to confirm a hearing loss • Example: Diagnostic audiologic evaluation • A key part in evaluating the success of EHDI is accurately measuring the number of children not passing a screen that subsequently receive recommended follow-up tests

4. Recent Data • Over 90% of newborns were screened for hearing loss in year 2004 • Estimated data indicated only 48% of infants referred from screening were documented to have received a diagnostic evaluation • What happened to the other 52%? Source: DSHPSHWA www.cdc.gov/ncbddd/ehdi/data.htm

5. Are They Really LFU? • Infants not documented to receive evaluations are commonly referred to as loss to follow-up (LFU) • Only a fraction of children are truly “lost” to follow-up • Most probably receive follow-up but the results were not available to the state program • The reporting of results not being required • States may want to considered these infants “Loss to Documentation” (LTD)

6. What Does LFU Mean? • There is no standard definition for LFU • Variability in both how the term is understood and applied • Various LFU Definitions • Example 1: Any infants who fail to return for further testing, regardless of reason, • Example 2: Infants who cannot be identified through tracking.

7. Why Is this a Problem? • The lack of a standard definition makes it difficult to: • Determine a meaningful national LFU rate • Understand the true extent of LFU, which is important in determining progress towards identifying infants with hearing loss

8. Need for Standardization • JCIH recognized the need for standardization of definitions and reporting (2000, p. 811) • Recommended “the development of uniform state registries and national information databases incorporating standardized methodology, reporting and system evaluation” • Standardized data definitions and reporting practices has the potential to assist public health officials • E.g., Better evaluating the delivery of hearing related services and generating more accurate data

9. No Standardization: What could possibly go wrong? • Use of non-standardized definitions and data classifications can affect rates of • Hearing screening • LFU • Confirmed hearing loss • The information programs collect influences • How children are classified in relation to receiving services • Estimates of screening, referral, and diagnostic rates

10. Illustrating the Effects • Potential effects of using non-standardized definitions and data classifications on rates of hearing screening, LFU, and confirmed hearing loss are illustrated using a hypothetical birth cohort of 200,000 • Note: A program would never have the level of data presented here

11. Cohort Summary • 180,000 (out of 200,000 births) had a documented hearing screening • Referred 2.0% (3,600) of the 180,000 infants with documented screenings

12. Sample Diagnostic Data • A total of 61% of children received a complete diagnostic evaluation • However, the EHDI program could only document that 49% had been evaluated • The other 12% were evaluated but this was unknown to the EHDI program

13. Unknown Status • The remaining 39% of children who did not receive a diagnostic evaluation included • 21% who the EHDI program had concluded were not going to get a follow-up evaluation • 18% who the EHDI program could not document follow-up status

15. Sample Calculations

16. Calculating Diagnostic Rates • Based on this the EHDI program could calculate the LFU rate in two different ways • Classify any child not documented to have a follow-up evaluation as LFU, • Results in an estimate of 51% LFU • Exclude from the LFU category children with documentation of parental refusal or non-compliance • This would reduce the estimated LFU rate to 30%

17. Problems w. Calculations • Both measures misclassify the 432 children as “LFU” who actually received an evaluation but whose documentation was not available to the EHDI program • Neither measure is satisfactory as the absence of reporting of all evaluations results means programs cannot accurately assess the effectiveness of the EHDI process

18. Conclusions • Ensuring children receive recommended follow-up is essential in the early identification of hearing loss • In 2004, less than half of children (48%) were documented to have received an evaluation • Need to focus on ensuring more children are documented to have received recommended evaluation • More complete reporting of all evaluations results to EHDI programs is needed • Increased standardization of definitions is needed .