Title: 'Cutting Your Loss to Follow-up Rates in Half or More: Alternative Calculations for EHDI Programs'
Track: 6 - Follow-up, Tracking and Data Management
Keyword(s): Data Management, Tracking, Loss to Follow-up
Learning Objectives:
  1. explain various ways of reasonably calculating Loss to Follow-up in EHDI programs
  2. prioritize on which children location efforts should be focused
  3. summarize why loss to follow-up rates may not be as bad as they appear in CDC reports


Although much concern has been expressed about the high Loss to Follow-up/Loss to Documentation (LTFU/D) rates for EHDI programs reported by CDC, there is evidence that the true LTFU/D may not be as bad as it appears in CDC reports. The numerator for CDC’s LTFU/D statistic is # of contacted but unresponsive + # of unable to locate + # of unknown And the denominator is Total # Not Passing the Final Screen. One could easily argue that the families in the “Parents Contacted, but Unresponsive” category are really not Lost to Follow-up and they are definitely not Lost to Documentation since the EHDI programs have documented that these families are “unresponsive.” If we subtract the # of contacted but unresponsive from the numerator and leave the denominator the same, the LTFU/D rate from 2009 through 2012 is 32.0%, 27.2%, 25.1%, and 18.0% -- about half of what has been reported by CDC. This is arguably a more accurate way of reporting the data. Another way reasonable way of calculating LTFU/D is to do it as a percentage of the total # of children screened. Those percentages (calculated from the CDC data)range from 1.12% to 0.61% over the past 7 years and there is a steady decline over time. This is a sensible way to calculate LTFU/D, but it is on a completely different metric. Other alternative ways of calculating LTFU/D that are just as reasonable as the methods now being used will be discussed (such as using the number of babies failing the screen prior to leaving the hospital). Suggestions will also be made for how state EHDI program staff can prioritize on which children to focus their limited resources in tracking and finding children who need additional screening, diagnosis or intervention.
Presentation: Tuesday_Clements_940_KarlWhite_1718.pdf

Handouts: Handout is not Available
CART: Topical Session 4- 1718.rtf
Karl White - Primary Presenter,POC
Utah State University
     Credentials: PhD
      Dr. White is a Professor of Psychology, the Emma Eccles Jones Endowed Chair in Early Childhood Education, and the founding Director of the National Center for Hearing Assessment and Management. He has been the PI or Co-PI for over $50 million of competitively awarded research. His work has been recognized with awards from such diverse organizations as the Deafness Research Foundation, the American Association for Speech Language and Hearing, The Swedish Society of Medicine, and the Alexander Graham Bell Association for the Deaf. He has hundreds of publications and presentations at scholarly meetings, and has been an invited speaker to more than 35 countries. He also serves on many national and international advisory groups for organizations such as the United States Department of Health and Human Services, the World Health Organization, the Institute of Medicine, and the American Academy of Pediatrics.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.