Title: 'Family Experiences and Improvement Recommendations regarding the Delaware EHDI program.'
Track: 9 - Program Evaluation and Quality Improvement
Keyword(s): experience, satisfaction, evaluation, interviews
Learning Objectives:
  1. Explain the use of a survey to evaluate the various components of an EHDI program
  2. Choose activities recommended by parents to improve Delaware EHDI process.


In order to improve the Delaware EHDI program, the Department of Public Health contracted a firm to interview two groups of EHDI screened patients. The first group was composed of families of babies who required and passed outpatient re-screening in 2013 (NHL). The second group included all babies diagnosed with hearing loss from 2011-2013 (HL). After randomization using SAS, 81 NHL families were interviewed as well as 13 HL families. These phone interviews were in English or Spanish and used the Massachusetts evaluation survey, modified. The groups were representative of DE demographics.78% of the NHL and 76% of the HL families were satisfied or very satisfied with hospital birth screen. 89% of NHL and 75% of HL families felt they received clear explanation of their failed hospital screen. At the same time 93% of NHL and 84% of HL families were satisfied or very satisfied with outpatient re-screens. More importantly, 92-93% of both groups felt that re-screen explanations were clear, their questions were answered, and they received clear instructions regarding the next steps to follow.It is of note that of the 40 families with HL, we were only able to contact 13, and they all participated. Of these families 56% were satisfied and 31% were very satisfied with diagnostic testing. 88% received clear answers to their questions and 94% received clear instructions regarding next steps. 68% and 91% were satisfied or very satisfied with audiology and the EI program respectively. 2 of 10 families felt they received biased information about their communication options.Some of the suggestions given by families included providing results in writing, providing an “Information Kit” for families with HL, and pairing families with a social worker or peer navigator to help them understand the system and resources available.
Presentation: Tuesday_Coe_145_KateTullis_1705.pdf

Handouts: Handout is not Available
CART: Topical Session 6- 1705.docx
Carlos Duran - Primary Presenter,Author,POC
Christiana Care Neonatologist
     Credentials: MD, FAAP Medical Director Delaware Early Intervention-North
     Other Affiliations: Chair EHDI Advisory Board, Delaware AAP Chapter Champion
      Dr. Duran is a neonatologist, graduate of Hershey Medical Center of Penn State. He has had a lifelong interest in hearing screening of the newborn. He is the founder of the Delaware Infant Hearing Assessment and Intervention Program and the chair of the current advisory Committee. He has been instrumental in the maintenance of the Delaware EHDI Program.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Kate Tullis - Co-Presenter,Author
Delaware Divsion of Public Health
     Credentials: PhD
      Kate Tullis received her PhD in Toxicology from the University of California, Davis. Following a fellowship in Human Genetics at the University of Michigan she worked as a program coordinator for NYMAC, a regional genetics collaborative. In 2011 she became the Newborn Screening and Genetics Administrator for the State of Delaware where she directs the Newborn Metabolic and Hearing Screening Program.

Financial -

Nonfinancial -