Presentation on theme: "TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities The findings and conclusions in this presentation."— Presentation transcript:
TM Centers for Disease Control and Prevention National Center on Birth Defects and 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 Defects and 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 Marcus Gaffney, MPH Denise Green, MPH Scott Grosse, Ph.D Craig Mason, Ph.D March 2007
TM 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)
TM 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
TM 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
TM 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)
TM 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.
TM 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
TM 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
TM 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
TM 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
TM 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
TM 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
TM 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
DOCUMENTED Not Pass SCREENS Hearing Loss No Hearing Loss TOTAL Diagnostic Evaluation Documented Diagnostic Evaluation Completed26415001764 Diagnostic Evaluation Not Completed Missed Cases116410526 Incomplete Diagnostic Evaluation 2690116 Documented that Evaluation Not Possible 63238 Documented Refusal of Evaluation 175976 Diagnostic Evaluation Not Documented Evaluation Did in Fact Occur71361432 Evaluation Did Not in Fact Occur138510648 TOTAL63829623600
TM Sample 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
TM Calculating 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%
TM 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
TM 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.
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