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Centers for Disease Control and Prevention

National Center on Birth Defectsand Developmental Disabilities

The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention (CDC) and should

not be construed to represent any agency determination or policy.

Centers for Disease Control and Prevention

National Center on Birth Defectsand Developmental Disabilities

The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention (CDC) and should

not be construed to represent any agency determination or policy.

Measuring Follow-up in EHDI : The need for standardization

Measuring Follow-up in EHDI : The need for standardization

Marcus Gaffney, MPHDenise Green, MPHScott Grosse, Ph.DCraig Mason, Ph.D

March 2007

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OverviewOverview• 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)

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Why is Follow-up important?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

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Recent DataRecent 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

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Are They Really LFU?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)

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What Does LFU Mean?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.

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Why Is this a Problem? 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

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Need for StandardizationNeed 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

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No Standardization: What could possibly go wrong?

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

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Illustrating the EffectsIllustrating 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

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Cohort SummaryCohort 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

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Sample Diagnostic DataSample 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

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Unknown StatusUnknown 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

   

DOCUMENTED“Not Pass” SCREENS

   

Hearing Loss

No Hearing

LossTOTAL

Diagnostic Evaluation

Documented

Diagnostic Evaluation Completed 264 1500 1764

Diagnostic Evaluation

Not Completed

Missed Cases 116 410 526

Incomplete Diagnostic Evaluation

26 90 116

Documented that Evaluation Not Possible

6 32 38

Documented Refusal of Evaluation

17 59 76

Diagnostic Evaluation Not Documented

Evaluation Did in Fact Occur 71 361 432

Evaluation Did Not in Fact Occur 138 510 648

  TOTAL 638 2962 3600

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Sample CalculationsSample Calculations

Received a complete diagnostic evaluation :

61.0% ( 1764 + 432) / 3600

Documentation of the results of a complete diagnostic :

49.0% ( 1764 / 3600 )

No documentation of a diagnostic evaluation :

30.0% (432 + 648 ) / 3600

Documentation that a complete diagnostic evaluation was not

performed :21.0%

(526 + 116 + 38 + 76 ) / 3600

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Calculating Diagnostic RatesCalculating Diagnostic Rates

• Based on this the EHDI program could calculate the LFU rate in two different ways

1) Classify any child not documented to have a follow-up evaluation as LFU, – Results in an estimate of 51% LFU

2) Exclude from the LFU category children with documentation of parental refusal or non-compliance – This would reduce the estimated LFU rate to 30%

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Problems w. CalculationsProblems 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

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ConclusionsConclusions• 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